posted
Hi I'm new to here and have lots of questions.
I had a weird rash on my ankle over 4 years ago. With a lenghy list of health problems since then.
I just found out last week i tested positive for rocky mountain spotted fever. I've been on doxycycline 100mg twice daily for 8 days now. First three days i slept for about 18 to 20 hours a day. Since then I feel like i got ran over by a semi truck. Symptons are:
full blown flu, muscle aches,weekness in arms and legs, massive headache, bone and joint aches, hard to concentrate pain off to left and right side of upper back. major muscle twitches, pins and needles in arms in legs. and sore throat. feel like i'm going to pass out. rapid heart beat. high blood pressure, looks like skin color in face is deep reddish orange, eyes look like i'm possessed.
I think the worse is over but this surely should be clearing up bye now.
Liver and kidney tested and mri on brain, all were ok. Strep and mono came up negative. I did have an elavated ebv virus that turned into mono a few months ago but there saying it is cleared up now.
I live in ohio and lyme is somewhat rare and rocky mountain spotted fever is extremeley rare. Doctors around here seem like they don't have much knowledge on tickborne illnesses. It turned into a nightmare just trying to figure out what was wrong with me.
My questions are:
1. Could it be possible this is a herx from the RMSF bacteria instead of the lyme bacteria? I could not find any articles anywhere saying RMSF can cause a herx. only Lyme and Syphilis.
2. Could it be possible I have gotten coinfected with lyme also? Do the same ticks carry both? I tested negative for the (i beleive) IGG or IGM lyme test. Tested negative for syphilis three times But i went to cleveland clinic a few months ago and my vitamin D 25 and calcium levels were extremely low. I think less than half of what they were suppose to be. I can't find anything that says RMSF causes this but i have seen where lyme can cause the low levels of Vitamin D 25 and calcium.
3. Anyone familiar with Cleveland Clinics technique of testing for lyme? I beleive it has something to do with measuring the vitamin d and calcium levels but i could be wrong. My family doc has never gotten a report from them guys stating what my blood work means.
4. Could lyme build a resistance to the doxycycline if i stopped and started taking it again? I'm afraid to stop taking the doxycycline and test positve later for lyme.
Thanks in advance for anyhelp.
[ 26. May 2007, 02:11 PM: Message edited by: SpottedRocky ]
Posts: 37 | From Ohio | Registered: May 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi- I am sorry you have not felt well.
100mg of Doxy doesn't sound like it would be strong enough. Please check out Burrascano's treatment guidelines regarding dosing: http://www.ilads.org/burrascano_0905.html It is an excellent resource to refer to often.
There is so much to learn about Lyme disease/Tick borne illness and it can be overwhelming. The following is just the tip of the iceberg. Hopefully you have been tested for co-infections as well.
Tick borne illness is a very complex multi-system disease that is not understood by mainstream Md's across the U.S.A. It is first important to understand that there are many issues that surround this disease, the unreliable testing, the illiteracy of mainstream Md's and the even treatments.
Many of us with LD, including me, have seen many doctors and had many tests before seeing an LLMD (Lyme Literate MD) and having blood tests sent to a private specialty lab that specializes in Tick Borne Illness, Igenex and finally being correctly diagnosed.
Many of us had been sick for months or years before being correctly diagnosed. Lyme Disease can manifest itself in many ways, since there are so many symptoms and 300 strains worldwide. It is rare to even find two people with the same set of identical symptoms.
I was misdiagnosed in 1996 with Fibro, but had manageable symptoms. I did have migraines over the years, vertigo and muscle aches that would come and go.
Lyme Disease can lie dormant and "percolate" coming out one symptom at a time or explode with many symptoms all at once.
It wasn't until 2006 I experienced a sharp knife like shoulder blade pain that felt like it went straight through to my chest and a mainstream MD misdiagnosed me with muscle strain, gave me cortisone shots and unknowingly disseminated Lyme Disease throughout my body. Cortisone is very detrimental and in my case the shots suppressed my immune system giving free reign to the bacteria, spreading it throughout my body making it active and widespread.
Within weeks widespread symptoms appeared including neuro symptoms that included pins and needles, numbness, shooting, burning, stabbing pains and flu-like symptoms, I had 35+ symptoms in all, I could not eat and lost 20 pounds within weeks, I felt like I was dying.
My symptoms were extreme and excruciating. But others can experience much less severe symptoms, each person is different. Symptoms can wax and wane as well.
I ended up seeing 12 different doctors & some of the best specialists in California and had many, many tests, including MRI's, CAT scans, Ultra Sounds, blood tests, including 2 negative blood tests for Lyme disease. All other labs returned normal as well. A respected Neurologist suggested MS, my primary doctor diagnosed me with Anxiety, another MD diagnosed Fibromyalgia again. None of them were correct & when you think about it, none are "diagnoses" they were "symptoms".
Many, in fact most are misdiagnosed with everything but Lyme disease, from MS, ALS, Fibro, CFS, Lupus, Anxiety just to name a few, until finally finding direction to correct lab testing and Lyme literate Md's.
As I searched on line using my symptoms, Lyme Disease kept coming up. I learned that the blood test that doctors use was highly unreliable and can produce a false negative more times than not.
The blood test (devised by the CDC) given at all conventional labs like Quest, hospitals and other labs, was not designed to diagnose Lyme disease, but instead in was designed to track a narrow band of patients for epidemic purposes and has a reliability rate of about 30%. Please click on this link to read more about the unreliable CDC tests, read both pages: http://www.ilads.org/basic.html
Unfortunately, doctors rely 100% on the unreliable blood test. I realized (after extensive research) that you can have a negative blood test and still have Lyme disease.
Md's will also rely on patient recollection of the actual tick bite or classic "bulls eye" rash that sometimes follows a bite. But in most cases patients do not remember a bite at all or a rash. Since many infected ticks are the size of the period at the end of this sentence, up to 85% of people do not recall a bite, which can occur in hidden areas such as the hairline, scalp, armpits or even genitals.
Most Md's don't believe ticks live everywhere in the U.S., but ticks know no boundaries & Lyme has been found in all 50 states. The most common and likely place to get Lyme Disease is your own backyard.
The most important thing I can tell you right now & that I hope you understand, it is very important, illiteracy about Lyme disease runs rampant among conventional doctors and specialists, none are aware of the co-infections. You can run around for years from MD to MD and be told many different things. Even if they use their unreliable blood test for Lyme they never test for the co-infections. Ticks carry at least 4-5 other other bacteria that can also be transmitted through a bite called co-infections. Other bacteria include Babesia, Bartonella, Mycoplasma & Ehrlichiosis. It is imperative to be tested for Lyme and all the co-infections as each has their own symptoms and requires different treatment and you will not get well treating Lyme if you are also co-infected and up to 60% of us are co-infected.
This is why it is imperative that your blood test be sent to a reputable lab that specializes in tick borne illness called Igenex.
To be correctly diagnosed with Lyme disease (or to rule it out) and be tested for the co-infections you must see a Lyme literate doctor. These doctors are not easy to find and are virtually unknown to conventional/mainstream Md's.
Please click on the link below you can read much more at the website and their is a contact link if you think you'd like to see an LLMD (Lyme literate MD), just mention your city and state in your email.
Some conventional doctors/specialists may try to make you believe and may tell you they are "Lyme literate", but they are not. This is a very complex disease, not even infectious disease Md's understand.
The common misconception among Md's is that Lyme is a very rare disease & if you have it, it is easily cured with a short course of antibiotics and neither is true.
Lyme is the fastest growing infectious disease, right behind AIDS in the United States and the number one vector borne disease in the U.S. LD needs prompt and aggressive treatment.
There is no quick fix for treating Lyme disease, it is a disease and diseases can be managed. It requires high dose, long term antibiotic treatment, until the patient is symptom free plus an additional 2 months beyond that. The average chronic LD patient can take 1-5 years of treatment before symptoms abate.
There is so very much more to learn. Below is an informational site with a good rescources list that will lead to other websites and info.
At least now you are on the right path. Take care.
posted
1. Could it be possible this is a herx from the RMSF bacteria instead of the lyme bacteria? Hmmmm...I'm not sure, but it wouldn't be unusual at all to have contracted 3 or even 4 coinfections from the tick. So it could be from Lyme.
2. Could it be possible I have gotten coinfected with lyme also? Do the same ticks carry both? answered above
3. Anyone familiar with Cleveland Clinics technique of testing for lyme? I'm sure it sucks! Most large hospitals have NO CLUE when it comes to Lyme testing and/or treatment!
4. Could lyme build a resistance to the doxycycline if i stopped and started taking it again? I'm afraid to stop taking the doxycycline and test positve later for lyme. Depends upon how long you stop it...but generally speaking I would guess no.
Please keep reading and find an LLMD right away! You're going to need one!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I'm currently on doxy 100mg twice daily too. This is precautionary due to a recent tick bite.
At first I felt better, but now I am feeling very weak and my joints feel like they can't support my body. Just overall, I don't feel as good.
I have been wondering if it is a herx, or a reaction to the abx. Your symptoms make me feel more comfortable that it may be a herx.
So, likely you too are suffering a herx? I don't know if RMSF causes a herx like lyme does.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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