posted
Here is my story. Any help or advice is greatly appreciated.
A little over a month ago I came down with what I thought was the flu. It started with a stiff neck, goose bumps, a fever and a severe headache. The headache was so bad that moving my eyes left to right caused pain. At night I would wake up with my clothes and blanket completely drenched/soaking in sweat. No stuffy nose, sore throat or cough. The fever would get up above 102.5 and it persisted for about a week. After 7 days I called my doctor to see if this was normal of the flu. She figured that maybe I just had a virus but she wanted to see me to do some blood work. When I went in to her office my temp was 103.3. I was tested for strep, mono, kidney infection - all negative. She thought my symptoms sounded like Lyme, and I have a dog, so she tested me for Lyme. IgM Western Blot came back positive for bands 23 and 41. All bands of IgG were negative. Testing was done by Quest.
We were somewhat skeptical of a Lyme diagnosis because I do not remember being bitten by a tick, I was not in the woods and I did not have a rash and I live in downtown Boston. About 3 weeks before I became ill I did a charity dog walk so myself and my dog were exposed to 100s or 1000+ dogs. So, I began treatment of 100mg 2x per day for 21 days of doxycycline. Almost immediately after beginning treatment my fevers were gone. I felt as though a fog lifted from me and I thought I was back to normal.
12 days into treatment the stiff neck returned and the fever slowly crept back in. At its peak it got up to 102.7. I was treating with ibuprofen and I would experience cycles of fever and then severe sweating. The night sweats were back as well. I also started to experience muscle weakness. I was experiencing difficulty doing things like holding my hairbrush for the normal time I dry my hair, turning a key in a lock, holding my cell phone up while I talked on it. It wasn't ``painful'' per say, just more difficult than it should have been. I called my Dr. and went back in for more testing. This time she tested me for CMV, toxoplasmosis, some other mono-type viruses and she ran another Lyme test. This Lyme test was NEGATIVE. I was on day 15 of medication when my blood was drawn. She also ordered a rheumatoid factor test and an ANA test - both were normal. Also ordered were tests for C-reactive protein and erythrocyte sedimentation. Both were elevated. I do not know the CRP number but sedimentation was 55 where normal is below 20. Also, my blood test showed that in the 2.5 weeks since the prior blood test I had become anemic. All other blood test results were normal. Upon my urging she also added on a babesia test and this was negative.
Again, the fevers went away, the sweating slowly went away although I felt as though I was sweating more than normal for awhile. All in all since last Wednesday (8 days) I have been feeling pretty normal. Now I feel as though the neck stiffness is returning and my temp has been creeping up to around 99. Normal for me is around 97.5. I'm not sure if I'm just paranoid or if I am having another relapse of the same symptoms.
I should mention that I also at times feel like I am having mild heart palpitations and mild shortness of breath. I would feel at times like I just couldn't get enough oxygen by breathing through my nose. The shortness of breath was the worst during the first round of symptoms.
How likely do you think it is that my first Lyme test was a false-positive?? Are they common when RA and Lupus have been ruled out? What else could cause a false positive test?
If anyone could help me I would GREATLY appreciate it!
Posts: 24 | From Boston | Registered: Nov 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Boston,
Welcome and so glad you found us. Sorry that your sickness has brought you here though.
NOT LIKELY FALSE POSITIVE: I was diagnosed with bands #23 & #41 positive on the IGM only as well. My CRP was also elevated. I have been under treatment now for 7 months and still not fully recovered.
I have had heart thuds and other symptoms you are describing. It gets worse if you dont treat lyme and the coinfections properly.
I did not remember being bitten by a tick either. You live in an endemic area and have animals.
I think your doctor is WONDERFUL for even recognizing it. That is great news! Getting a positive result is SOOOO important and most people would kill for it! LOL
And Quest is noted for being the crappiest lab when it comes to lyme testing. So you are VERY lucky.
Even one month of doxy at 400 mg a day does not cure lyme. It usually takes months of therapy.
My opinion is that you absolutely have lyme. You should seek out a LLMD IMMEDIATELY and get treated. The longer you wait, the harder it is to eradicate. You also need to be tested for coinfections, as these are bugs that travel with the lyme infection.
At the front of this board there is a section called SEEKING A DOCTOR where you can post a request for a good doctor in your area, or perhaps someone can give you tips on one they are using.
Here is a guideline that was written by the top lyme doctor in the USA. Most LLMD's sortof follow his protocol.
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: 96239 | From Texas | Registered: Feb 2001
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posted
sounds like you may still be dealing with lyme and possibly babesia. Doxy doesn't treat babesia so definitely look into it. I live in the boston area and am happy to help offer some assitance with doctors if needed.....
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Boston
Sounds like Lyme and Maybe Babs also--
Babs is a Co Infection that you get from the same tick bite- Ticks can carry about 10 different germs at the same time-
200mg a day of Doxi is not a high enough dose- you should be taking 400 to 600 mg spread threw the day-- for at least 6 weeks-
Low dose of doxi does almost nothing -
Its Very important not to eat Any dairy - vitimines - minerals ect when taking Doxi- they make the doxi almost useless--
False positives tests are VERY Rare - You HAVE it -
You will find Help here --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Get tested for Chlamydia Pneumonia too (IgG and IgM). It's a bacterial infection that can cause the symptoms you have.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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adamm
Unregistered
posted
Lyme can be contracted in many ways other than via tickbite: from blood transfusions and organ transplants; sexually; congenitally; from breastmilk; via contact with infected blood and urine; and, some theorize, via contact with infected saliva and tears.
And the only way to get a false positive Lyme test is if you have another systemic spirochete infection (like syphilis), in which case you'll need aggressive treatment as well.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hey, Boston,
I saw a thread here saying that today (Fri. Nov. 14) at 7:30 your time, there would be a news segment about lyme on Ch. 5 in Boston.
posted
Thank you EVERYONE for your helpful replies. I am actually in Florida on vacation since Friday and of course as soon as I got off the plane and checked my temp, my fever has returned. The muscle weakness and drenching night sweats are back too. So far my temp has gone up to 101.7 but I have been aggressively using ibuprofen. What a bummer on a vacation though
I was supposed to go to my primary care first thing Wed morning but I think that I will call her tomorrow morning and just request a referal to a LLMD.
I don't think that she will prescribe more doxy because she seems skeptical of Lyme since my second test was negative and she already stated that 200mg/day for 21 days was "treating aggressively."
A lot of people have mentioned babs and I did test negative for it through Quest. It seems that the babs test is very unreliable so I guess that maybe that is still a possibility.
Again, thank you everyone for your input and help. When I return home I will have more time to really dive into the resources on this forum and hopefully I will get the help that I obviously need. Thank you, thank you, thank you Posts: 24 | From Boston | Registered: Nov 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
If you need help, go to the section in the front called "SEEKING A DOCTOR". Make a post there requesting info on doctor in you area.
Good luck in your quest for an LLMD. Keep us posted.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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I want to strongly note to you that even the CDC emphasizes that Lyme is a CLINICAL diagnosis. Not test-driven. Tests are meant as screening criteria only, not diagnostic.
1) I, too, am a "city person". I live in Somerville, on the Cambridge line. Somerville being the most densely populated city in the country per capita 2nd only to Manhattan and the industrial cities in NJ.
2) I do not have any pets 3) I am not "outdoorsy". Hiked and camped once 16 years ago but wore DEET b/c mosquito bites cause a somewhat allergic reaction in me. Tick-borne diseases were not emphasized and still are not on DEET products. They refer instead West Nile. 4) I do not go on vacations down the Cape or "up New Hampshire". Less than a handful of times in my life, and again, DEET. It's not in my budget nor do I know anyone with vacation or homes otherwise in those areas that I visit.
I have a friend who has a dog and very well may have contracted lyme that way. OR the bushes right outside my doorway in the short 6-feet to the concrete sidewalk, overhang, and housed scads of ticks this year. We carried in at least 2 ticks and 2 nymphs on ourselves despite being careful this year. Plus: who the heck would suspect they'd be laying in wait there in the city, right?
I live a 2-minute walk from Inman Square. So: Downtown Boston or not, it's possible.
Same story for my sister, pretty much, and we both have it.
So: I'd like to dispel the myth that people have to live abutting conservation land or be in close physical proximity daily to deer habitat. It's completely erroneous.
I, my sister, and a neighbor on my street (Cambridge end) are living proof of that. There may be more.
When I went to my new PCP with the symptoms, he told me there is nothing else known in medicine today for an otherwise healthy person to present with the symptoms I have. I'm WAY too young---yes, 40 is young--to have anything else.
I haven't read your laundry list (trouble reading nowadays) so I don't know if neurological were included or not.
BTW: I know someone who was bitten by a tick recently and displays similar symptoms and was practically scoffed at and laughed outta the office by an infectious disease doctor at a major Boston hospital. He was told "highly unlikely" but did not tell him what it could be instead. It's insane.
Keep your mind open. But be your own best advocate.
Best of luck to you on this journey. I hope it's an easier one than what most here have gone through in the current medical/insurance system.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
Wow, it sounds very very similar to the Tick Borne Relapsing Fever my daughter had, which is a Borrelia bacteria (sort of a cousin to Borrelia Burgadorfi that causes Lyme) and Western Blots for TBRF can be "false pos" for Lyme.
It conferred by a soft tick, and most people don't remember being bitten, as soft ticks feed for minutes, not days.
However, it's more common west, and the soft ticks are normally found in rodent nests - any rodent nest exposure 1-3 weeks prior to first fever?
Not good that you're still ill, but with TBRF, the spirochetes show up in peripheral blood (blood near the skin) during fever episodes, and a simple test is to simply look for them under microscope, I would definitely ask that this be done.
Posts: 12 | From CO | Registered: Nov 2008
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quote:Originally posted by Boston03: I should mention that I also at times feel like I am having mild heart palpitations and mild shortness of breath. I would feel at times like I just couldn't get enough oxygen by breathing through my nose. The shortness of breath was the worst during the first round of symptoms.
YOu most-certainly have the laundry list! Wow. I'm sorry you are feeling so miserable.
The breathing issue is called "air hunger". There
are rounds of symptoms that morph, change. Some
return, some don't.
"Lyme affects the cranial nerves which is
responsible for many of our symptoms.
The 10th cranial nerve, or Vagus nerve, controls
heartbeat, breathing, digestion, spleen, liver,
and many things in the thorax. It runs up through
the back of the throat, too. This is how one can
have so many symptoms if it affects just that one
nerve. It often affects more than one nerve.
Many people with Lyme suffer from
shortness of breath, also known as air hunger.
Rapid heartbeat and heartbeat irregularities are
a daily occurrence."
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
Wow Melinda, the symptoms for TBRF really do sound like me except I live on the east coast and haven't been in a cabin. I wonder if it is found here too?
All of this information is so interesting to me. In my most recent (currently ongoing) relapse, I have been experiencing a really high heart rate, sometimes above 120.
I have labored, freguent breathing. When I was at the Dr. today it was extremley painful when my liver was pressed on. It was so painful I started crying!!
My Dr. did say there was some crackling in my lungs but after several deep breaths it went away and my chest xray was all clear.
All of these things surely do match the descripton of TBRF and I will bring this to the attention of the ID Dr. I'm going to see Friday.
Thanks!
Posts: 24 | From Boston | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If I were you, I would order an Igenex test kit and get tested for babesia. Get the babesia FISH test done too. Igenex is the one that offers that...it's a good one. It is good at finding babesia in the blood, but of course it could still come back negative because there are species of babesia not detected in the testing available to date.
Your symptoms sound very suspicious of babesia to me. I have babesia, and when I still had the tick on me, my fevers got up to 102.5-103. I think they were still that high after I had the tick pulled off though.
Drenching night sweats are another reason to suspect babesia. The tick that bit you could have been carrying both of those infections. We're not all lucky enough to find the tick that bit us, but you sound like a text book case of lyme and possible babesia to me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Another way to find out if you have babesia is to take the herb Artemisinin and see if your sweats at night get worse.
Artemisinin kills babesia. When I take this during the day, that night I sweat. The days I don't take it, I don't sweat that night. Probably because for me, it brings it out of hiding. But who knows, maybe for you it would actually stop your sweats.
If anything gets drastically worse or drastically better on Artemisinin, you probably don't need a blood test to tell you you have babesia, in my opinion. But no matter what, don't rule it out, because some people don't have a drastic response to it.
The best way to take Artemisinin is 4 days on, 3 off. Take 300mg-600mg per day, or less if that is all you can tolerate. Start slow. Spread out your dosages throughout the day (ex-- 100mg three times daily).
If you google Holley Pharmaceuticals, they sell good Artemisinin. Another good brand can be found here:
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sorry, I just re-read your post and thought of something else.
I read somewhere that doxycycline can be used to prevent malaria for travelers. (malaria and babesia are very similar pathogens)
It is possible that the doxycycline, while not fully "treating" your "possible" case of babesia, was having some sort of effect on it. So that could explain the decrease in fevers from it.
I think the fevers could still just be lyme, but like i said, investigate the possibility of babesia.
There is no doubt you have lyme, with that stiff neck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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