Sadly I am new to this discussion group but I will tell you my story. (Bear with me, it gets quite long and complicated.)
The first part of Sept., my wife and I went to Maryland to visit our son and daughter-in-law. We stayed at a campground near Annapolis.
There was a nice nature trail near the campground so on Saturday my wife, daughter-in-law and myself went for a long hike. Being very ignorant of the situation I wore shorts and didn't use any insect repellant.
The middle of the next week I had an itch on my right ankle from some unknown bite so I put on some hydrocortizone cream to relieve the itch. (All I could see was a small red pinhead).
The following Monday when we were getting ready to go home I noticed that the spot looked like it had developed into some sort of ring worm. I put on some antiseptic ointment and kept monitoring it for the 2 days of travel.
When we got home I was exhausted, my neck and shoulders ached but I just thought that was from 2 days of driving and pulling the camper.
On Wed. I was still tired but cleaned the camper and did some other work. That evening the dog tripped me and I got a small scrape on the knee of my other leg.
That night I was chilled and by midnight I was shakeing uncontrollably and had a fever of 102. I went to the emergency room but they couldn't find anything wrong. They told me to go to my regular dr. the next day. When I went my bp was 100 over 40 with a high white count. He thought that I had been bitten by a brown recluse spider and was having a severe reaction. He even did a spinal tap which was clear.
That night my left leg became very swollen, fire engine red and hot between the knee and ankle. When I went back to the ER they said I had cellulitis and immediately put me on IV antibiotics (probably the best thing that could have happened). At that time the ER dr. said "I wouldn't count out Lyme". My primary dr.said he had done a lyme test and it was negative so at the time I discounted the possibility of lyme.
I was on IV's for 1 week 3 times a day.
During that time I did some research on the computer and found out that that early lyme tests are not accurate.
When I went back to the dr. the next week we disusssed this and since the bulls-eye had not gotten worse and the fact that I was in an endemic area he changed his diagnosis to lyme and gave me 10 days of doxocycline.
When that was gone my symptoms got progressively worse so I went back. He said the guidelines were for 7 to 21 days and since I had had the IV he thought 10 days would enough but he would give me enough for 14 more days at a 100mg dose twice a day.
I went back to work for 4 hours a day but still did not get better. My boss recommended that I go back to my dr. and stay home till I improved. In the meantime I came upon this site and read how lyme can only be controlled with a long term antibotic treatment.
When I went back to my dr. he said that was a bunch of bunk and would only give me antibotics for 14 more days and I would be healed.
My 28 days supply is about gone and now my bite site has developed into a nasty looking sore with a red rash around it. My symptoms of headache, sore back of the neck, weakness, dizzyness, and sleeplessness have only gotten slightly more tolerable.
Last night at church I showed my dr. my leg and he said the sore must be from something else because my lyme would be healed. I told him I didn't think so but he said I've been reading to many alternative medicine sites.
Needless to say I am trying to find a more LLMD.
I hope that this didn't bore you but I had to get it off my chest and maybe could get a little advise on how to procede.
Posts: 43 | From Pella, Iowa | Registered: Nov 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi welcome to lymenet.
Many of us had problems getting a lyme diagnosis and/or proper treatment.
My advice- post in seeking a dr ...include where you are and where you can travel to. (state)
Someone will private message you with the info for a llmd.
make sure your private message is enabled cuz we do not post drs names on the board due to political reasons.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I was screaming at the screen as i read your post. I am so outraged at the IGNORANCE of doctors!! It is NOT rocket science people. When someone like you presents with a friggin BULLSEYE RASH and FLU_LIKE SYMPTOMS and TICK BITE IN ENDEMIC AREA and doctors are scratching their heads going...um...i dunno, could be....cellulitis.
I could just go on and on.
but that is not what you need. This and the ILADS site and the LDA sites are NOT alternative medicine sites. It is a WELL KNOWN FACT that Bb does not turn serologically positive until several weeks have passed (there is an actual number, i just cant keep it in my brain)
oh right---I am trying to stay on track here.
You are right to do your own research and you have a long road ahead of you, but you CAN get the treatment you need. Time is of the essence in your case. Have you posted on the Seeking Doctors section of this discussion board to find a better doc?
Best thing to do right now is to take the position papers from ILADS and the petition from LDA site and bring them to your doc along with the article that explains the attorney general's investigation into the newest guidelines put out by the IDSA. These are all reputable organizations and they all can prove that 28 days does NOT cure even the simplest cases of lyme. I do not have these websites handy.
From ILADS position papers: The article entitled ``Duration of Antibiotic Therapy for Early Lyme Disease`` recently published in the Annals of Internal Medicine is flawed in its methodology and in its findings. The collective experience of ILADS physicians has shown that 10 days of therapy has consistently proven insufficient in preventing the development of systemic manifestations of Lyme disease. Our experience proves most patients who are treated with short duration antibiotics return for repeat therapy when their symptoms do not improve.
Get yourself the best medical care that you can. best trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Leonard:
Sorry to hear about your experience. Many of us have found that most doctors do not know much, if anything about lyme disease and TBD co-infections -- pretty shocking since it is the largest vector borne disease in the US.
And pretty harmful for many of us who unfortunately have had similar experiences. You should read the newbie link in detail, you need this information.
The most important thing is to get an appointment with a llmd and get treatment with a doctor who actually knows something about tickborne illnesses. I don't know what type of IV abx you were on, or what dose, but 200mg/day doxy sounds like a low dose to me.
One week on IV is not long enough for lyme, as you already know.
Sounds like a bulls-eye rash to me. And your symptoms sound classic for lyme disease.
Good luck and get the earliest appointment with a lyme literate doctor that you can!!
Posts: 2557 | From home | Registered: Aug 2006
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I didn't clarify. I did actually have cellulitis in addition to lyme. A blood test revealed streptococcis (sp?) g in my blood. The dr. assumed that I contracted that, which is resides on the c\skin and enters the body through a small cut, because my immune system was run down due to the lyme.
Leonard
Posts: 43 | From Pella, Iowa | Registered: Nov 2006
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posted
Sorry about the typo on c/skin. I meant to hit the backspace and screwed up.
Leonard
Posts: 43 | From Pella, Iowa | Registered: Nov 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
quote: It puzzles me a little that you were treated with IV at the early stages and will still have lyme.
I wouldn't be surprised as Lyme is not caused by a single pathogen but multiple pathogens.
So even at early stage, monotherapy even at high dose might not cover all of these pathogens.
quote: That night I was chilled and by midnight I was shakeing uncontrollably and had a fever of 102.
The "chill and fever" symptoms probably imply that Babesia is involved.
Like other said, you need to seek extensive medical treatment from an LLMD.
This disease is not "hard to catch, easy to cure", but quite the opposite.
In addition, If I were you, I would take multiple abx not just one to cover all coinfections.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
The Role of Co-Infections in Lyme Disease Richard I. Horowitz, MD Internist, Private Practice, Hyde Park, NY Vice President, Board of Directors, International Lyme & Associated Diseases Society (ILADS) There are several other organisms found in ticks which when transmitted alone, or in combination with Lyme disease, may account for increased severity of symptoms and or persistence of illness. These organisms cause diseases which include, but are not limited to, Ehrlichiosis, babesiosis, bartonellosis, Rocky Mountain spotted fever, Powassan encephalitis, Q fever, tick paralysis, anaplasmosis, and STARI. Ehrlichiosis may cause high fevers, headaches, myalgias, and flu-like symptoms. Clinical laboratory findings may include positive antibody titers for Human Monocytic Ehrlichiosis (HME) and Human Granulocytic Ehrlichiosis (HGE now called anaplasmosis), with morulae in leukocytes (intracytoplasma colonies), and low white cell counts, low platelet counts with elevated liver functions in certain patients. Babesia microti is an intracellular parasite found in red blood cells which causes a malarial like illness. Children may complain of intermittent fevers, chills, day and night sweats, as well as having an increased severity and duration of Lyme disease symptoms. Diagnosis is made by antibody titers (IFA), blood smear, DNA (PCR) and RNA analysis (FISH assay). Antibiotic treatments include atovaquone and azithromycin, and clindamycin and quinine. Bartonella henselae are intracellular bacteria that can be transmitted either by a cat bite or scratch or a tick bite. When present in combination with Lyme disease, atypical presentations may result including visual problems, headaches, significant lymph node enlargement, resistant neurological deficits, and the new onset of a seizure disorder. Diagnosis is made by acute and convalescent antibody titers (IFA) and by PCR (DNA) analysis. STARI, Southern-tick associated rash illness, also called Master's Disease, is a Lyme-like illness caused by Borrelia lonestari, bacteria carried by the lone star tick. Continued severity and/or persistence of illness in a child or adolescent with Lyme disease necessitates searching for these other tick-borne diseases, both by titers and serial PCR's. Treatment regimens are still evolving, but significant clinical improvement may result once all overlapping co-infections are found and treated.
Posts: 1078 | From Fairland | Registered: Apr 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Leonard, Sorry you're here and nice to meet you.
I would do as the others recommended and post in the "Seeking a Doctor" section in order to find someone Lyme Literate.
Also, if you haven't yet. Take a picture of that rash on your leg. Put a ruler or coin in the picture so the size is easily seen. Also, it's not a bad idea to take a full picture with your face in it so they can see it's you.
As bad as you feel you do have a couple of plusses on your side. An early infection is more likely to respond faster and better to appropriate treatment. So it's better for it to be a couple of months with some antibiotics in you than years and years later.
I also think men, often, respond better to treatement than women of childbearing years. I could be wrong on that account.
Good luck, I hope you're able to get to a knowledgable doctor soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Practically, the definition for Lyme might have been changed from "Lyme is caused by Bb" to "Lyme is caused by multiple pathogens including Bb, Babs, Bart, Ehrl and others".
So the therapeutic strategy for Lyme is to use multiple modalities to target multiple pathogens.
It is very rare that a Lyme has been cured by a single abx that is effective for Bb, indicating that Bb is not the sole causative pathogen for Lyme.
Posts: 1078 | From Fairland | Registered: Apr 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
my thoughts exactly cave.
I am glad they found the apparently rare cellulitis, but they didnt find the definitely ENDEMIC LYME DISEASE!???
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