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    Old 06-02-2004, 06:22 PM   #1
    wifarmgirl
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    Need help in Wisconsin

    In over 5 years I hadn't been sick with the exception of a sinus infection now and again. I worked out 4 times a week and had been on a low-carb diet before I ever heard of Atkins. Then in February I got a sinus infection and pink eye the day before my husband and I left for a cruise. Biaxin and Erythromycin eye drops. Two weeks later, pink eye again, more drops. The beginning of March I had a sore throat, aches, chills, shoulder pain, and this *fuzzy* headache. I went in for a quick strep test-negative. A few days later I was at work and I got this really blurry vision with flashing lights combined with all the other symptoms. Within an hour my skin from the waist up was on fire! Trip to the ER that night, and my FP says it's polymyalgia rheumatica, which he figured out because of the eye problems. WBC is 13.4. He notes I'm borderline anemic. Puts me on 60 mg of Prednisone for 9 days, tapering over 3 weeks. Adds Vioxx 50 mg and Naproxyn for the pain. Sends me to a Rheumatologist the last day I'm on Prednisone. Rheumatologist is ticked I'm on Prednisone, vioxx and naproxyn. Tells me to quit all of it. Runs a bunch of tests anyway. Tells me to come back in two weeks. Sends me downstairs to see the Opthamologist stat, for pink eye. Opthamologist says episcleritis/conjunctivitis. Does cultures on both eyes, but says it looks like it's probably something rheumatologic. The next day he calls and says I have haemophilus influenzae growing in one eye. Decides that since I'm an RRT and have been treated twice with antiobiotic eye drops, that it's probably something recent. Puts me on Cipro for 14 days and a strong antibiotic eye drop. Tells me to come back in two weeks.

    In two weeks I'm feeling worse. All of the same symptoms, only now night sweats and low-grade fevers. Then this spinal pain IN my spine, from between my shoulder blades to the base of my skull. I tell the rheumatologist this. He says all of my tests are negative. Every single one. The one exception is my WBC, which is now 15.8. He says maybe a mild virus, or maybe because of the eye infection. He gives me a pamphlet on Fibromyalgia, tells me to take a look, and leaves the room. Of the 9 of 11 points of pain you need for fibromyalgia, I recognized TWO. The shoulder JOINT pain wasn't on there, none of the other symptoms I was experiencing were on there. He comes back, and I tell him so. He says, well, come back in six weeks if you are having problems. He insists it's fibromyalgia. If I'm having problems? I'm sicker than hell NOW! I leave in tears.

    The next day I go back to the opthamologist. It's my last day on Cipro. I'm feverish, in major pain that isn't being controlled with the ibuprofen I'm popping like candy. My head feels like it's going to explode with this strange *fuzzy headache*. Lights are driving me insane and I'm wearing sunglasses. The pressure in my spine is so bad I can't turn my head from side-to-side or up-and-down. The shoulder pain is a different kind of pain. Red swollen joints, and it feels like there is something right inside gnawing at them. I tell him so. He says, you know....this sounds like Lyme's Disease. He looks at my labs, and finds the Elisa negative. He asks what drugs I was on when I had them drawn. I tell him about the prednisone, vioxx, and naproxen. He puts me on Doxycycline, 100 mg BID. He runs more Lyme's tests. He runs a CBC.

    I no sooner get home than he calls me back. My CBC is 18.9, my hct and hgb and platelets are high. He tells me to come in and see an Internist he's set me up with. I can barely drive the 30 miles back there, but I'm hoping for an answer. I'm literally crying when I get there. The internist WONDERS WHY I'M there! He says stress can cause a WBC like this, and grills me on depression and suicide. I'm in so much pain and I'm walking like a zombie, yet he suggests antidepressants. I refuse. He does blood cultures and a urinalysis to appease me. I had to nap in the car before coming home. I could barely drive. When I got home I called work and begged for a week of vacation time.

    I did an internet search on Lyme's, which I knew nothing about, after popping my first Doxycycline. BINGO! It ALL matched. I had had all but two symptoms listed! And the most amazing discovery. The bulls eye rash. Two years before I had a rash like that on my---well, my tush. Obviously I'd never seen it, but my husband had. He said it was exactly the same. We live in Wisconsin, and my area is lyme infested. I've had other tick bites. We farm 1700 acres, hike, bike, 4-wheel, ect. Perfect match.

    I take three days of the Doxycycline which I started the day after my Cipro ended, but my stomach isn't agreeing. Diarrhea and vomiting. I have to quit it.

    The next day the Internist calls me. He says my Lyme's tests are confusing, he doubts I have it, but he wants to treat me. I tell him I stopped the Doxy the day before because of stomach problems. He puts me on Cefuroxime for two weeks. He tells me my only IGM positive is 41 KD, and I need two IGM's to be positive. He tells me I only have two positive IGG's, 41 KD and 23 KD, and I need 5 to be positive. I don't care. I think I'm on the way to a cure! The next day I'm worse. I'm crying to him on the phone. He sets up an appointment for a spinal tap that day. More tests, but the spinal tap relieves some of the spinal pain. No test results for 10 days he says.

    Two days later I still have all of the above symptoms, the spinal pain is still a bit better, but my heart is pounding with palpitations, and I'm incredibly dizzy with a sore throat. My husband takes me to the ER, and has to help me walk. EKG shows an ectopic HB (inverted P waves) and frequent PVC's. Another negative quick-strep test. CBC this time is 22, but my hct, hgb and platelets are even higher. The ER doc tells my husband and I that we need to go to the Mayo Clinic. He thinks I have some type of blood cancer. We mention the Lyme's disease, and I tell him my results of that. He gets ANGRY. He says it's NOT lymes, that I have some type of blood cancer and I need to see a Hematologist ASAP, to go to my FP on Monday (this is Saturday), and get in. That the only way my CBC would be NORMAL is if I lived in the mountains, and I don't, do I?

    I cried all weekend with the pain and with the idea facing me of blood cancer. My husband and I both did.

    On Monday we call my FP, who can't see us until 4:00. I can barely get out of bed this time. We take my ER lab copies to the FP, and he looks everything over and says, well, I don't see blood cancer. WHAT??? And he doesn't see Lyme's, either. WHAT??? My husband is getting very angry at this point and all I want to do is lay down, so he sends us to ANOTHER Rheumatologist, who we can't see for two weeks. He can't get us in anywhere else any sooner. He suggests to my husband that if we don't believe him we should go to Madison (the big city yanno), to the ER.

    We go, straight from there, and we take copies of everything! Another WBC there, hct, hgb and platelets are essentially the same as Saturday's. The ER doc says no lyme's, no blood cancer. But my normally low BP----102/74, has been gradually going up over the last doctor's visits he notices. It's now 185/99. (wonder why? between the pain and the aggravation?). He suggests that since I have a history of polycystic kidneys (though my urinalysis and kidney functions were fine), I may have some viral kidney infection. He gives me a shot of demerol for the pain, and my BP returns to normal. Wonder why. He says go to the new rheumatologist, the other one should have never tested you on Prednisone. Ok. No blood cancer, but no answers either.

    I'd just finished the Cefuroxime two days before meeting the new Rheumatologist. We are prepared for a fight to get some answers. We are shocked when we get no arguments. She says it's Lyme's. That I probably haven't had it long, maybe a few months, but definitely not as long as two years. None of the spinal tests are back. She gives me Vicodin. She puts me on another week of Cefuroxime. She makes me an appt. to see an Infectious Disease Doc. She charts every single CBC I've had done since Feb. and does another (17.4, the hct, hgb and platelets the high side of norm now) She puts me off of work for two weeks---until I see the ID Doc.

    I'd been off of Cefuroxime one week before seeing the ID doc.. I was feeling pretty decent the last week of it. Functioning, in pain, but able to do household chores and stay up for a few hours. It all hits me once again. Even worse. I'm sweating constantly, and I feel like knives are stabbing me in the head. The ID doc looks everything over---AND SAYS IT'S NOT LYME'S!!!! I'm in shock. I tell him what the Rheumatologist said. I tell him the entire story. He says, well, I want to run some more tests. Since I'd been out of the country, he runs tests for Malaria and Dengae. Then HIV (I've only been with two men ever, and my husband for 12 years!) and HIV- related stuff like Cryptococcal antigen, CMV, Fungal profiles, and even Histoplasmosis.

    I couldn't miss any more work. I went back today and barely made it through 8 hours of a job I love with my heart and soul. I've never, until this, missed a day of work with the exception of the first time I had pink eye in February (they sent ME home), in FIVE YEARS.

    Yesterday I'm feeling something strange on my tush. In the same spot I'd had the spider bite. My husband says it's the size of a quarter. It burns like hell. Can you get the bulls eye rash twice?

    I go back to the ID Doc Friday. I'm in desperate need of a Wisconsin doctor that can help me. I know all of the labs are going to come back negative and I'll be back with fibromyalgia.

    Please help.

     
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    Old 06-03-2004, 12:57 PM   #2
    ticker
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    Re: Need help in Wisconsin

    wifarmgirl, a bullseye rash is a definite sign of Lyme. You need to be treated.

    Besides Lyme disease, ticks can also transmit other infections--Babesiosis, Ehrlichiosis HME & HGE, Bartonella, and Mycoplasma. To me, many of your symptoms sound like Lyme disease, Babesiosis and possibly Ehrlichiosis. Some of the hallmark symptoms of Babesiosis are heart palpitations, night sweats, dizziness, and severe headaches.

    It is my understanding that people who have Lyme should not take steroids. They can make symptoms much, much worse. This may be what happened in your case. Regarding Doxy, 200 mg daily is not strong enough for Lyme. I believe the recommended dose for Lyme is 300-600 mg daily. Doxy can cause nausea. You should eat someting substantial before taking it. Also, you cannot have any dairy, iron, or magnesium products two hours before or after taking it or it will not be absorbed properly.

    Get a photo of your rash--this is very important. Place something near it, like a coin or ruler, to give it size definition. That way you have evidence of it.

    Are you familiar with the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme are going through treatment their symptoms become much worse or they may get news ones. When the antibiotics are killing the bacteria they release toxins, making the person sicker. It can be frightening, but it is a sign that the antibiotics are working. It is important to know this.

    It is crucial to see a Lyme knowledgable doctor. Tickborne illnesses are very misdiagnosed and undertreated. No tests are completely reliable and a knowledgable doctor will consider your entire history. There are only a handful of Lyme doctors in the country. The closest one to WI that I know of would be in Springfield, MO. Would you like the name?

    Hang in there okay? There is good help available.

    Last edited by ticker; 06-03-2004 at 01:02 PM.

     
    Old 06-08-2004, 05:53 PM   #3
    shannon30
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    Location: Wisconsin
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    Re: Need help in Wisconsin

    WOW!!! I am so sorry to hear what you have gone threw. I went threw similar symptoms in the past and went from doc to doc and was also told I had fibromylagia, panic disorder, and the list goes on. I ended up going to the doc I have now who did ton's and ton's of tests. he did a complete MRI of my whole body and blood work that all showed I had thyroid disease....I would like to know where in Wisconsin you are? I am in Hartford and we have a great doc out here that cares about his patience and not the cash... How are you feeling now? I hope better..Shannon

     
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