posted
I have a sneaking suspicion that I might have Lyme Disease, but after being blown off by my doctor yesterday I'm not sure what, if anything, I should do. This might get long winded, please bear with me...
Back in Aug/Sept 2002 I was doing some field work at an Army post in Kentucky which was heavily infested with ticks. Despite taking every precaution, I know I was bitten at least 2 or 3 times, including one on my scalp that was quite engorged by the time I found it. I did not notice any rash (although did not have anyone check in my hair) and I do not recall being sick around then. However, that was a long time ago so I may have just forgotten. Since then I've had the usual seasonal colds and one nasty flu that went around my office in 2004. I do sometimes get that icky "I'm coming down with somehting" feeling and nothing follows, but never thought anything of it. In spring of 2006 I was diagnosed with Interstitial Cystitis. Last fall I began to get frequent headaches and noticed 2 lumps, one in my neck to the right of my spine and one above that on the base of my skull. Both cause me pain. Went to the doc and was diagnosed with migraines (although these don't feel like the migraines I used to get from 1996-2001), doc said she did not feel any lumps and prescribed Imitrex. Then late this winter I had headaches ("migraine" or no) everyday for at least a month. Went back to the doc and was put on a beta blocker to prevent migraines. The beta blocker made me a total space case, so I cut the dose in half. I was still having spells of dizziness and lightheadedness - thought I was going to pass out several times while driving, very scary!! These were accompanied by a feeling that I needed to take very deep breaths and even then was not getting enough oxygen to my brain. I quit taking the beta blocker altogether, and while it is better I am still having the lightheaded feeling on occasion. Then about 4 weeks ago I noticed my neck was stiff and painful. I became fatigued to the point that taking a shower or washing my face is a major task. Also, my dentist pointed out that my throat was extremely red although it did not hurt (since then have had some slight soreness), and I have had a low grade fever off and on. The neck pain was constant and did not go away for weeks (not to mention the pain in my "lumps" is still there), so I made a dr. appt. but could not get in for a while. In the meantime I did some research on what could be causing the neck issue, and one of the things that came up was Lyme. I noticed some symptoms of chronic Lyme that were eerily familiar to me - things that I have noticed for the past couple of years but chalked up to my imaginiation or side effects of medication (I am also on various things for anxiety and depression, have been since 1998). This includes ringing in my ears, losing feeling/circulation in fingers and toes, no libido, ever increasing number of annoying floaters in my eyes, unexplained nausea, increasing fogetfulness and slight confusion (have a hard time thinking of the right words when speaking, and I have a great vocabulary!), and problems with balance and coordination (stumble a lot, walk into door frames and corners, drop things ofen - feel like my fingers won't "work with me"). Finally got to see the doctor yesterday, and when I mentioned Lyme she actually laughed at me. She said that I didn't have a high enough fever and that it had been too long since exposure. She asked if I had gotten it in 2002 then why did I just now get a stiff neck. I had to say I don't know, but that I was pretty sure it could happen. No use. She gave me some muscle relaxers and ear drops (one was red when she looked in it) and sent me on my way. So...
Am I totally crazy to think I could have Lyme disease? Or does anyone think it could be a real possiblity? And if so, anyone know a doctor in the Cincinnati area who would at least take me seriously? Thanks in advance for any advice you can give.
Posts: 3 | From Cincinnati | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Welcome MLavender,
I read your post and with each sentence I became more certain that you should be evaluated by an LLMD (Lyme Literate Medical Doctor).
You have many symptoms that point to Lyme, and neither a rash nor a high fever need be present. Lyme affects us each differently. It is a complex and complicated disease.
Also, since you were bitten and were exposed to many ticks in an endemic area I think you make a "good case" for the need to see an LLMD. You may have also gotten co-infections from the tick bites.
Unfortunately, your doctor dismissing you by laughing is all too common. I imagine most of us on this forum have been humiliated and degraded by physicians. Please try to forget what happened and move forward in your quest for a diagnosis and treatment.
If you go to "Seeking a Doctor" and request help, someone will come along and give you names of LLMDs in your area.
You are NOT crazy. We have all wondered that ourselves. This disease has us doubting every thing. It's one of the symptoms.
I wish you the best of luck in your journey toward better health. Lymenet is a great, wonderful place to come for advice, questions and sharing. There are many wise people here. I am grateful to all of them.
All the best,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Unfortunately, there is not a doctor in Cincinnati who will treat Lyme. I flew to NY for my treatment. My local doctor diagnosed me with Somatization Disorder.
I would get tested for Lyme. It sounds like it could explain your symptoms and you do have a history of tick bites.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
welcome lavender!
sorry, but those of us with severe neuro lyme can't read or comprehend what you wrote all in that 1 long paragraph.
please break it up so we can help you ok; use my guidelines below, and we'll give you all the info you need. ok hugs....
******************
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS 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.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Fine Betty G...just for you.
ORIGINAL MESSAGE
I have a sneaking suspicion that I might have Lyme Disease, but after being blown off by my doctor yesterday I'm not sure what, if anything, I should do.
This might get long winded, please bear with me...
Back in Aug/Sept 2002 I was doing some field work at an Army post in Kentucky which was heavily infested with ticks. Despite taking every precaution, I know I was bitten at least 2 or 3 times, including one on my scalp that was quite engorged by the time I found it.
I did not notice any rash (although did not have anyone check in my hair) and I do not recall being sick around then. However, that was a long time ago so I may have just forgotten.
Since then I've had the usual seasonal colds and one nasty flu that went around my office in 2004. I do sometimes get that icky "I'm coming down with somehting" feeling and nothing follows, but never thought anything of it.
In spring of 2006 I was diagnosed with Interstitial Cystitis. Last fall I began to get frequent headaches and noticed 2 lumps, one in my neck to the right of my spine and one above that on the base of my skull. Both cause me pain.
Went to the doc and was diagnosed with migraines (although these don't feel like the migraines I used to get from 1996-2001), doc said she did not feel any lumps and prescribed Imitrex.
Then late this winter I had headaches ("migraine" or no) everyday for at least a month. Went back to the doc and was put on a beta blocker to prevent migraines.
The beta blocker made me a total space case, so I cut the dose in half. I was still having spells of dizziness and lightheadedness - thought I was going to pass out several times while driving, very scary!!
These were accompanied by a feeling that I needed to take very deep breaths and even then was not getting enough oxygen to my brain. I quit taking the beta blocker altogether, and while it is better I am still having the lightheaded feeling on occasion.
Then about 4 weeks ago I noticed my neck was stiff and painful. I became fatigued to the point that taking a shower or washing my face is a major task.
Also, my dentist pointed out that my throat was extremely red although it did not hurt (since then have had some slight soreness), and I have had a low grade fever off and on. The neck pain was constant and did not go away for weeks (not to mention the pain in my "lumps" is still there), so I made a dr. appt. but could not get in for a while.
In the meantime I did some research on what could be causing the neck issue, and one of the things that came up was Lyme. I noticed some symptoms of chronic Lyme that were eerily familiar to me - things that I have noticed for the past couple of years but chalked up to my imaginiation or side effects of medication (I am also on various things for anxiety and depression, have been since 1998).
This includes ringing in my ears, losing feeling/circulation in fingers and toes, no libido, ever increasing number of annoying floaters in my eyes, unexplained nausea, increasing fogetfulness and slight confusion (have a hard time thinking of the right words when speaking, and I have a great vocabulary!), and problems with balance and coordination (stumble a lot, walk into door frames and corners, drop things ofen - feel like my fingers won't "work with me").
Finally got to see the doctor yesterday, and when I mentioned Lyme she actually laughed at me. She said that I didn't have a high enough fever and that it had been too long since exposure.
She asked if I had gotten it in 2002 then why did I just now get a stiff neck. I had to say I don't know, but that I was pretty sure it could happen.
No use. She gave me some muscle relaxers and ear drops (one was red when she looked in it) and sent me on my way. So...
Am I totally crazy to think I could have Lyme disease? Or does anyone think it could be a real possiblity? And if so, anyone know a doctor in the Cincinnati area who would at least take me seriously?
Thanks in advance for any advice you can give.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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As many people will tell you, your symptoms are consistent with lyme disease. Of course, the problem is that many of the symptoms of lyme disease can be confused with other illnesses. That is why lyme disease should be included in a well-thought out differential diagnosis.
While blood testing for lyme disease can be inaccurate (you may get a negative result when in fact you are infected), if you were to get a positive result it would be very strong evidence that you need treatment. You may not be able to find a doctor who treats lyme disease per se in your area, but hopefully you can find a different doctor who is willing to order a blood test for lyme disease.
If you can find a physician willing to give you a blood test for lyme disease (and -- importantly -- other tick borne infections, such as Bartonella and Babesia), if at all possible request testing though IgeneX. This lab specializes in testing for tick-borne illnesses, and they test for more antibodies to lyme than most other labs. You will find contact information for this lab and the tests to order by searching the threads here for Igenex.
Depending on your insurance, you may have to pay out of pocket for a test from IgeneX. However, given their increased accuracy, I consider this a worthwhile expense. Given your history of tick bites, it is perfectly reasonable -- and wise! -- to check for lyme disease.
I had a similar history of tick bites and vague symptoms, but without the unequivocal rashes. If the chronic fatigue clinic where I was getting treatment had not included testing for lyme disease in their differential diagnosis procedure, I would not have found out what was wrong with me, and I would not be on the road to recovery.
I was "lucky" in that my blood test results were unequivocally positive -- there are many complexities to their interpretation, as you may later find. This is a complex, but treatable, illness. Based on my experience I would strongly urge anyone with a history of tick bites and mysterious ailments to be tested for lyme disease.
Good luck Kim
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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By the way, MANY of us here have Interstitial Cystitis.
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: 96239 | From Texas | Registered: Feb 2001
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Welcome, you are not crazy! Non LLMD are the crazy ones.
Please get tested through Igenex for Lyme and co infections and find a LLMD.
Best of luck
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi MLavendar,
Welcome! I agree with the others.
You can start by getting a Dr to order a western blot IgG and IgM, test #188 and #189 from Igenex lab in CA.
fill it out and take it to the Dr with you so he has something concrete to look at.
Remember though that Lyme is never, never ruled out by just a lab test, although 99% of Dr's do this out of ignorance.
Lyme is a clinical diagnosis, based on history and symptoms. The diagnosis can be supported by labwork.
If you can't find a Dr to order the western blot, then you should just go directly to a LLMD for a complete evaluation since you should see one anyway based on your history and symptoms.
The lyme ELISA and western blots from other labs are often negative. Don't waste your time and money on them.
See page 7 of Dr B's paper for Diagnosing Later Disease and western blot info.
Read this entire paper carefully and become familiar with the info.
Be prepared that there may be a wait to see a LLMD and often they don't take insurance.
A good LLMD is worth his weight in gold though.
Continue to read as much as you can and keep posting.
I hope you get answers soon....it took me 21 years and I had to do the research myself also.
Good luck!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
seek help, god bless you for doing that.
check your profile above for my pm to you on OHIO LLMDS NOT MANY THERE!
check this out since military base lyme info link!! ***************************************************
info from daise, I'd like to add to the Social Security information. If you've won an award from Social Security but they haven't actually paid it--for example, back pay--then go to (or call) your democratic congressperson's local office, ask for the one who handles Social Security problems, and ask that they contact their congressional liaison (something you or I can't do directly.) Doing this, I got paid in two weeks. However, several weeks before I was evicted and went "homeless," staying with a friend for awhile.
Veterans can go to: http://www.nchv.org/ to "homeless," then to the "provider" page. The VA is terrible about telling veterans about what's available. Some states have homeless vet housing, in various forms, for homeless veterans--never the VA.
Sometimes it's a scuzzy day shelter. Sometimes it's a place more like a boarding house (such as in Albuquerque where I live) where you pay a third of your income and get a roommate, or $400 a month for a room to yourself. These are not the Hilton.
Often the state then looks for a GOOD social worker on site, to help find services; and for a GOOD nurse on site and a GOOD job finder person on site. Not the really lousy VA social workers and job finders. Meals are often free. I am termed "homeless veteran" but I have a roof over my head--in fact, my own room!
The VA does not pay for Lyme diagnosis and treatment. In fact, the VA deliberatly misdiagnosed me with a stroke--by 2 MRI's and 4 neurologist with a PhD MRI technician, who read the MRI.
Actually, I had Bell's palsy, and most every Lyme sign and symptom. A year and a half later I figured out what I had, I told the VA, and they refused me. It is their nationwide, unwritten policy not to diagnose or treat chronic Lyme disease
Lyme Patients using LLMDS vs. military drs NON-LYME LITERATE from LymecaregiverNY 4-8-08
Show this to your military doctor: *****************************************
Chest pain in a military recruit.Beck AS, Okulicz JF, Rasnake MS. Department of Internal Medicine and Department of Infectious Diseases, Wilford Hall Medical Center, Lackland AFB, Texas 78236, USA. [email protected]
Lyme borreliosis remains an important and common vector-borne illness in the United States, Europe, and Asia. In the majority of cases, it presents as a localized rash that seldom causes further complications with antibiotic treatment. If left undetected however, various neurologic, cardiovascular, and musculoskeletal manifestations may occur.
Reported here is the case of a basic military trainee who first presented with cardiac manifestations of Lyme disease, highlighting this tick-borne illness as a rare, easily forgotten, and treatable cause of complete heart block.
PMID: 18364626 [PubMed - indexed for MEDLINE] Get yourself to a LLMD.
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Turns out the dizziness I was experiencing was from an ear infection - I guess I'd had it for months, but with no real ear pain did not even consider it a possibility.
Still think that I could possibly have Lyme though, so I will definitely look into finding a doc that will help me out.
Posts: 3 | From Cincinnati | Registered: May 2009
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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. 
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