posted
Over the past month and a half I have been sick with a number of symtoms and I'm not sure what I should do at this point.
In June I was on vacation in Northern Minnesota. After hiking my wife and I found a number of ticks on us, with a few of them being deer ticks but none actually in the skin. We checked well after that long hike but didn't for the rest of the vacation, which was probably not a good idea. The day after I got back I found a large mark/rash on the back of my thigh. It wasn't a bulls eye rash, but a dark red raised center and a larger (3") outer ring. I had a terrible headache throughout the next week and went in, thinking it could be Lymes. The doctor agreed and put me on 2 weeks of Doxy without taking a test. The headache never went away completely and I started feeling dizziness as well. A week after I ended the antibiotics the headache got worse, the dizziness increased and I started feeling tingling in my hands and random chest and neck pain. I also noticed an increase in anxiety, which is unusual for me. I went back in and had a lyme antibody test which came back negative. With my symptoms worsening I went back to a few different doctors and they dismissed it as anxiety or migraines. A second rash appeared two weeks after finishing the meds. This one was on the front of my thigh(same thigh as the last rash), about the size of a half dollar, deep red, and quite hot. My lymph nodes in my leg by the mark became swollen and sore as well. I went back in again and was put on 12 days of Azithromiacin, with the doctor assuming the test was inaccurate and that I did in fact have lymes. Throughout this time my symptoms seemed to migrate, with chest and upper abdominal pain for a few days, then back to headaches/dizziness. I also experience tingling on my head and neck occasionally. Towards the end of the 2nd round of meds and since then, the headaches/dizziness became worse and I started becoming nauseated and occasionally throwing up. The headaches seem to originate at the top of my neck or base of my skull, with pain behind my sinuses and eyes. The headache is a feeling of fullness and pressure that also extends into a tight feeling in my jaw. I went back in this past Wednesday and had another Lyme Titer and it too was negative. The past week I also had additional blood work and an MRI of my head, everything coming back perfectly normal.
At this point it feels like my doctor has ruled out lymes and said if I don't feel better in two weeks he will refer me to a neurologist.
I have read that taking an early dose of antibiotics can effect the test results and feel like there are so many symptoms the point to lymes.
Any advice on how to proceed? Does this sound like Lymes or possibly something else? Most of the doctors have said that the early antibiotics should have taken care of a lymes infection and that it's probably something else.
To me, with the vacation and exposure to deer ticks, myriad of odd symptoms, and normal blood work/mri, it has to be some reaction from a bite.
Posts: 4 | From St. Paul, MN | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up post for easier reading:
Over the past month and a half I have been sick with a number of symtoms and I'm not sure what I should do at this point.
In June I was on vacation in Northern Minnesota. After hiking my wife and I found a number of ticks on us, with a few of them being deer ticks but none actually in the skin.
We checked well after that long hike but didn't for the rest of the vacation, which was probably not a good idea.
The day after I got back I found a large mark/rash on the back of my thigh. It wasn't a bulls eye rash, but a dark red raised center and a larger (3") outer ring.
I had a terrible headache throughout the next week and went in, thinking it could be Lymes. The doctor agreed and put me on 2 weeks of Doxy without taking a test.
The headache never went away completely and I started feeling dizziness as well. A week after I ended the antibiotics the headache got worse, the dizziness increased and I started feeling tingling in my hands and random chest and neck pain.
I also noticed an increase in anxiety, which is unusual for me. I went back in and had a lyme antibody test which came back negative.
With my symptoms worsening I went back to a few different doctors and they dismissed it as anxiety or migraines.
A second rash appeared two weeks after finishing the meds. This one was on the front of my thigh(same thigh as the last rash), about the size of a half dollar, deep red, and quite hot.
My lymph nodes in my leg by the mark became swollen and sore as well. I went back in again and was put on 12 days of Azithromiacin, with the doctor assuming the test was inaccurate and that I did in fact have lymes.
Throughout this time my symptoms seemed to migrate, with chest and upper abdominal pain for a few days, then back to headaches/dizziness. I also experience tingling on my head and neck occasionally.
Towards the end of the 2nd round of meds and since then, the headaches/dizziness became worse and I started becoming nauseated and occasionally throwing up. The headaches seem to originate at the top of my neck or base of my skull, with pain behind my sinuses and eyes. The headache is a feeling of fullness and pressure that also extends into a tight feeling in my jaw.
I went back in this past Wednesday and had another Lyme Titer and it too was negative. The past week I also had additional blood work and an MRI of my head, everything coming back perfectly normal.
At this point it feels like my doctor has ruled out lymes and said if I don't feel better in two weeks he will refer me to a neurologist.
I have read that taking an early dose of antibiotics can effect the test results and feel like there are so many symptoms the point to lymes.
Any advice on how to proceed? Does this sound like Lymes or possibly something else? Most of the doctors have said that the early antibiotics should have taken care of a lymes infection and that it's probably something else.
To me, with the vacation and exposure to deer ticks, myriad of odd symptoms, and normal blood work/mri, it has to be some reaction from a bite.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
PASS on the trip to the neuro. They do not believe in Lyme disease either and you will be ignored again.
Testing during the first several weeks is VERY LIKELY to come back falsely NEGATIVE. You obviously have Lyme... just my non-medical opinion....
One that I think YOU would agree with!!
A rash such as you decribed means LYME. PERIOD. Take a few pics of it. TAke one with a ruler next to the rash. Keep it for PROOF that you have LYME!
Begin your search for a Lyme specialist in MN. Please do that before you get any worse!!! You need immediate care and with plenty of antibiotics to knock this out.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You have lyme disease. You had the rash which is diagnostic for lyme.
2 weeks of doxy won't cure lyme. Neither will 12 days of zith.
You need to get to a doctor who specializes in lyme disease. Then, you will be treated properly. You won't get well until you get to such a doctor.
Contact support groups in your state (see Support Groups on left side of page) and you can also post in the Seeking a Doctor part of this site. This way, you will get names of doctors who treat lyme disease. This is the only correct way to find a doctor who knows what they are doing when it comes to lyme disease.
To get your education on this disease, read the Burrascano lyme treatment guidelines found here:
They are not an easy read because they were written for doctors. But, you will find out what a complex disease you have and what good lyme treatment looks like. Pages 9-10 list lyme symptoms. You will see all of yours there.
Please read page 7 carefully. You will see that the lyme tests are not very good, so doctors who treat lyme know not to rely on them for the lyme diagnosis. See this quote also from that page:
"ERYTHEMA MIGRANS Erythema migrans (EM) is diagnostic of Bb infection...."
That means that if you get the rash, you have lyme disease--period. You had the rash. Then, you got another rash. So, you have lyme.
The first sentence on the page is also very important:
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms."
This says that the tests you took are not definitive. The doctors who are relying on the tests are showing that they don't know much about lyme disease.
Expect to travel to see a good lyme doctor. Many people have to go out of state.
I suggest you look for a doctor who follows the Burrascano guidelines. He is the U.S. and world guru on lyme disease. Many doctors in other countries follow his Guidelines. Ask for a doc who follows Dr. B when you call the support groups and the doctor's office.
I had undiagnosed lyme disease for 10 years. I completed my lyme treatment over 5 years ago and I am still symptom-free, enjoying my life.
This can be you too, but the doc is the key. You have to get away from the regular doctors who know nothing about lyme.
Neurologists are the absolute worst doctors for lyme patients to see. I was sent to one in the beginning before I knew any better. They want to do a spinal tap on you. Burrascano says that lyme rarely is found in the spinal fluid. Sure enough, there was none in my spinal fluid. So, the neurologist yelled at me that I didn't have lyme disease and did not treat me in any way. In other words, they treat you like you have a mental problem.
My advice is to skip them. Everyone on this board can give you their neurologist horror story.
If you did not know, lyme disease is in the middle of a major medical controversy (think WAR) and all doctors have taken sides. One side (including neurologists) believes that lyme disease is RARE (like, very rare) and is easily cured. That is what you have experienced so far. The docs believe that if you had lyme, they have cured you with their short courses of meds.
On the other side are the docs who treat lyme all the time. They know lyme is an epidemic and it is very difficult to treat. Many of them had lyme themselves, like Dr. Burrascano. Or, a family member had it. So, they know 2 weeks of meds won't do the trick.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Keep reading and posting questions. We will help you all we can.
And, welcome to LymeNet !!
Posts: 9931 | From Maryland | Registered: Dec 2007
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onbam
Unregistered
posted
the rash means that 100% you have Lyme.
Please post in seeking a doctor and find one known to us to be Lyme-literate, as there is a coverup in medicine about this and most doctors thus have no idea how to treat it.
Check out underourski.com lymecryme.com undertheightball.com
You need to do WHATEVER IT TAKES in order enable yourself to take 400mg doxycycline/day for 3 months past the point at which all symptoms resolve. The alternative is an possibly-lifelong, contagious brain infection. multiple drugs--a cell-wall inhibitor, an intracellular drug, and an anti-spore agent will probably be needed. If you've had a rash following a tickbite or any sort of positive test--that is definitive proof. Don't believe a negative, as the tests that we've been all)owed to have are only 30-50% sensitive (as described on lymecryme, good tests get withheld from us.) www.lymeinfo.net/medical/LDSeronegativity.pdf
in addition, i might treat with these herbs, or at least banderol. (another researcher martin sievers, concluded that samento made things worse).
posted
hate to beat a dead horse but you have lyme...no if ands or buts...please see someone as soon as possible, the quicker you take care of this the better off you will be in the long run.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
Thanks for all of the replies! I posted a Dr. request for the twin cities in the designated forum.
Hopefully I can get in soon and get started on some more antibiotics.
Are there any ways to treat the headache and dizziness in addition to the antibiotics? My Dr. prescribed naproxen and vicodin. The Naproxen helps a bit and the vicodin just makes the dizziness worse. Also, are there certain activities or foods I should be avoiding?
Posts: 4 | From St. Paul, MN | Registered: Aug 2010
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posted
Are there certain foods you should avoid? Yes. SUGAR. I cant post links but if you check out Dr Burrascanos treatment guidelines (a large PDF file) he has the dietary restrictions. I have chronic lyme and cant see a LLMD. I stopped eating sugar and am low carb as well. It made a drastic difference in my symptoms. Its tough to follow but necessary IMHO. I still have some issues but nothing like it was. Youre about to embark on the journey of a lifetime. I read everything i could. Still do as there is so much to learn. I wish you the best!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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I'm glad you are looking for a doctor--you most certainly have lyme disease. I had many of your same symptoms- especially the fullness in my head. I only tried exedrin migraine. It didn't help of course. It's good that you saw neuro to rule out any physiological problems. Also, did you get an ELISA or Western Blot test done? Western Blot is better than ELISA
Posts: 19 | From pennsylvania | Registered: Jul 2010
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Sorry, I accidentally sent message--wasn't finished writing. LOL! Neither blood test is totally accurate, however, if you have some positive bands on western blot, that might help confirm your dx. The rash in and of itself is confirmation! I have been on Doxy since 6/25 and my symptoms still come and go. Although, I am feeling better over all. You have to get treated asap.
Posts: 19 | From pennsylvania | Registered: Jul 2010
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posted
Sorry, I accidentally sent message--wasn't finished writing. LOL! Neither blood test is totally accurate, however, if you have some positive bands on western blot, that might help confirm your dx. The rash in and of itself is confirmation! I have been on Doxy since 6/25 and my symptoms still come and go. Although, I am feeling better over all. You have to get treated asap.
Posts: 19 | From pennsylvania | Registered: Jul 2010
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posted
Avoid the sun if/when you get back on doxy.
And yes, avoid sugar and simple carbs, like white rice, bread, white pasta, potatoes.
Those foods will feed the Lyme spirochetes. It is also important to stay away from those foods because while you are on antibiotics, you are very likely to end up with intestinal yeast. That is something you don't want!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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