Pennsylvania: Pa. State Rep. Todd Rock recovering from Lyme disease

Pennsylvania: Pa. State Rep. Todd Rock recovering from Lyme disease

"Erythema Migrans"

Very good foreign YouTube illustrating pictures of Lyme Rashes... www.youtube.com./watch?v=hqYPS6DLAGA&feature=related.

Gloves in the mail

After being bit again (4/20/10) I was almost afraid to garden and still had not planted my favorite flowers. These gloves miraculosly arrived in the mail from Memorial Sloan Kettering Cancer Center on Friday June 11, 2010. The gloves were enclosed as a symbol of our shared goal of helping patients grow healthier as they overcome their diagnosis of cancer. They were my symbol to start planting and that I have done!! I will buy more flowers in the next few days and keep planting. Thank you Memorial Sloan Kettering for your gift and I will send a gift in the mail to you too!!

Lyme is no joke

It amazes me how SO many people seem to think Lyme is a Joke.... I was talking to a neighbor earlier today.... He said he found a few ticks on his body, was given abx and tested negative, no big deal. He said he thought Lyme was concocted by the drug companies. A doctor I use to work for said he gets bit all the time, removes the ticks and treats himself, no big deal...



For some reason Lyme is not taken as seriously as it should be. I know several people around here that wound up in the hospital and almost died from Lyme .... Check out http://www.lymememorial.org/



There are also many famous people that have or had Lyme... Check out WWW.bada-uk.org/wordpress/?p=284

Lyme cases on the rise

Pennsylvania had the most reported cases of Lyme disease in the US for 2009 (4950). There were 3818 reported cases in 2008 for Pennsylvania. For every case reported there may be as many as 10 cases that were not reported.

Ticks attach to warm moist places

The tick can attach almost anywhere but prefer warm, moist areas. Most commonly the groin, armpits, behind the knee, woman's underside of breast and neck(hairline).. Generally you don't feel the tick bite so it's important to check your body after being outside. Some experts think you can be infected almost immediately after the tick attaches to your skin while others think it takes 36 hours or more.

Pictures of tick and my stomach

These are pictures of the tick that bit me last week and my stomach...I took preventive antibiotics and monitoring the area.

Close encounter of the tick kind....

I was outside yesterday picking up branches and doing yard work for a few hours. Came inside and found an adult female blacklegged deer tick on my stomach... It was engorged and already started feeding on my blood. I removed it with tweezers, kept the tick and will update further. Going to take preventive antibiotics and monitor the area on my stomach...

Rash that occured a year later

This is a picture of a rash that developed almost a year later. This picture was taken in May of 09 and the rash was in the same spot as one of the inital rashes on my left leg. This rash vanished after a few days but I found it interesting the way it appeared and disappeared. The oval and rounded rashes I initially had were very similar to those on the CDC and Canadian Lyme sites and lasted for 4-6 weeks.

According to http://www.jemsekspecialty.com/ "A little recognized fact about the EM rash
is that it can recur, usually in the original site with or without abx therapy in ~ 5 -10% of patients."

Lyme is often not taken seriously

Seems like doctors would rather say you don't have Lyme even if you have it...The rash could be staring them in the face and they don't recognize it. Your test could be positive and they could tell you it's negative. They could also say you had Lyme but don't have it anymore. I've been told all those things. I definitely had an oval expanding rash on my chest and 2 rounded destictive Lyme rashes on my legs. I had a Positive IGM test from Quest labs on 3 occasions for the first 6 months...A big problem is the CDC/ASPHLD states the IGM should only be used during the first month. This is because IGM usually converts to IGG in about 2 months and IGM disappears in 6 months. This is not necessarily the case with Lyme... More IGM blots may be positive with an active, persistent or chronic infection. Everytime Borrelia reproduce it stimulates IGM and sometimes IGM is the only antibody detected. The ILADS position paper states that IGM is a useful predictor at ALL stages of disease...Lyme should be a clinical diagnosis and treated accordingly... Pamela Weintraub wrote a wonderful book "Cure Unknown inside the Lyme Epidemic." Lyme may have been overdiagnosed in the past but now I believe it's underdiagnosed. I have found that many doctors have an attitude about Lyme and don't take it seriously... This needs to change! Doctors need more education, Lyme needs to be treated ASAP and more research needs to be done for accurate testing and treatment so a cure can be found.

Early identification of Lyme rash

News anchor Donna Hamilton from WBALTV 11 Baltimore had a very similar oval rash in July of O9.... She was treated with 4 weeks of antibiotics and is fine. The sooner the rash is identified and treated the better. Unfortunately not all doctors know what the rash looks like and early identification is SO important... When a Lyme rash is present it MUST be treated right away! A delay in treatment can result in a persistent or chronic condition...

4 more LLMD's

After I saw the first LLMD and was not pleased I decided to go for other opinions. I still had all 3 bands of IGM (23, 39 and 41) and my legs continued to be my biggest problem. Throughout my Lyme ordeal I was basically on antibiotics for a total of 2 months.... I went for several opinions and decided what was best for me.... I couldn't see a LLMD for a while so I asked my regular doctor for zithro and tried that for several weeks at a relatively low dose. The zithro didn't do anything for the legs so I stopped taking it. As a matter of fact I believe the zithro made me feel like I was having a heart attack.... Not long after I stopped taking zithro my chest felt like it was being crushed, very scary feeling. This lasted for ~ 1/2 hour and I was thinking about going to the hospital but decided if it was due to Lyme or zithro it would go away. I did see another internist the following week and he recommended a sed rate, crp and did an ecg on my heart that showed sinus tachycardia. We talked about Lyme and he said all those Lyme doctors are quacks... Didn't you hear about the one that killed somebody on the mainline? I didn't like his attitude so decided I'd go back to my regular doctor for the labs and follow up... My sed rate and crp were normal but the Elisa and IGM continued to be positive. My IGM was still positive 5 months after the rash and my legs were still on fire. To me this meant I had a persitent infection....

In Oct of 08 I went to one of the best neurologist and LLMD's in NYC.... Insurance did not cover the $$ I paid for his service.... The findings on his report were consistent with Lyme neuroborreliosis with neuropathy, dysautonomia, hypercholesterolemia, cardiac arrhythmia and brisk reflexes of yet determined significance. He recommended:
1. Repeat EMG and nerve conduction studies of the legs
2. Epideral nerve fiber studies of the thigh and calf
3. Blood for quantitative immonoglobulins, IFE, CLq, SSA, SSB,
Sm,RNP,dsDNA,ANA,ANCA, thyroglobulina nd thyroid microsomes, B12,
folate, C3,C4,gliadin, cardiolipin, dsDNA and other tick borne
disease serologies.
4. Blood to Stony Brook lyme labs and serology.
5. Blood to Mayo Clinic for paraneoplastic autonomic serology
6. Contrast MRI of the brain and spinal cord
7. Brain Spect
8. Consideration of Lumbar puncture for CSF analysis and lyme serology

All these test would be thousands more not covered by insurance. I had to decide what to do... and decided to get another opinion....

The next Lyme friendly doctor I saw was covered under insurance and he recommended more antibiotics (CEFTIN). He said I wasn't on antibiotics long enough.

The next LLMD recommended high doses of (AMOXICILLIN). This doctor was very caring and in practice for many years taking care of the Amish.

Finally the last LLMD I saw recommended Ceftin and Zithro.

I wasn't sure what to do but I was beginning to feel better. The cold winter weather seemed to gradually improve my burning legs (paresthesia)... As the legs got better my ankles started to hurt and swelled up... I did not have swollen knees but sure had and still have swollen ankles. The last LLMD was also into natural hormone replacement and he put me on progesterone which I tried for a short time.

I felt like my body was healing on it's own and decided not to take anymore antibiotics. The last labs I had taken 4/30/09 continued to be positive for IGM 23 and 41. I was also negative for bart and babs. Everything appeared to be normal except for an elevated cholesterol... Was I cured of Lyme? Not sure.... My ankles are still swollen and I have monthly headaches and insomnia...

The last lyme labs I had taken from Quest 6/14/10 continue to reveal IGM 23 and IGG bands 41 and 30 ... IGM band 23 has been present for 2 years which I find interesting and now band 30 is present in IGG.... I will continue to monitor my labs prn...

Why I call myself Sherlock

In 2003 I received the Sherlock Holmes award for finding the most missing classmates from our graduating class . I found almost 1/4 of our class of 400 and received a blender at the reunion. I enjoy searching for missing people and doing research on the computer. I came across something interesting the other day. I put the pieces of the puzzle together and found out today that I was right. Anyway, I like putting pieces of the puzzle together until everything fits.... This blog is mainly about Lyme but I have to use my Sherlock skills to put the pieces together and I'm still working on it... Actually, putting the pieces of Lyme together is much more difficult than finding missing classmates. I'm on a mission to improve education, research, identification and a cure for Lyme disease. I'm starting simple with the rash and will progress from there.

First appt with LLMD

My first appointment with a LLMD was in Aug of 08 ~ 2 months after the 3 rashes and one month after I tested CDC positive for ALL 3 IGM bands (23, 39 and 41)... I saw one of the doctors on the list provided, he was cheap and could see me sooner than other LLMD's... Only cost $150 and was highly recommended by another Lyme patient . He spent an hour with me and told me I was probably bit before. Said the first time you are bit you don't get a rash. I found that very interesting! I grew up in NY and could have been bit anytime growing up or spending time outside. My sister had juvenile arthritis in her knee and believes it could be secondary to Lyme. Anyway, this first LLMD made me think that I could have been bit before and my body healed on its own. He perscribed diflucan which is usually given for yeast infections. I found that strange but decided to try his treatment. He said he had very good success with diflucan. I took a small dose of diflucan for 13 days but continued to have burning legs and other symptoms of a persistent Lyme infection. There was only one study that attributed improvement in Lyme disease to diflucan.... When I told the LLMD that the diflucan wasn't helping and asked for an antibiotic or something to help my burning legs. He said " How would we know the diflucan was working if I give you an antibiotic." I decided not to go back to this doctor and get another opinion....

Lyme rash blog continued

I started this blog in June to help educate about Lyme particularly about the rash. I haven't written much because my mother was in the hospital for 3 months and passed away. Now I plan to work on all those things I started including this blog. There is
SO much confusion and misinformation about LYME, even about the rash! As stated in my first blog the rash began as an OVAL rash on my chest and gradually expanded. I should have taken a picture but I didn't know. I also should have received treatment when I only had the one oval rash. Instead the bacteria began to spread and the next week I developed 2 more rounded rashes on my legs. I should have taken pictures of those rounded rashes too. Multiple lesions are present less than 10% of the time and do represent disseminated disease. I finally started to receive treatment on June 13,2008 which was 10 days after the initial rash. The dermatology office perscribed 100 mg of Doxycycline twice a day for 21 days. During that time I developed horrible headaches, felt hot and cold, low blood pressure, insomnia,paresthesia and various other symptoms that would come and go...The worst symptom was the burning legs, 24 hours a day. I could not stand to have anything against my legs ( socks, blanket, pants). My legs literally felt like they were on fire ALL the time for ~ 7 months. I saw 2 neurologist, the first one was June 30, 2008 which was 27 days after the initial rash. The neurologist did an EMG on both lower legs and found no irregularities. Why did I still have this burning pain 24 hours a day?? I asked for more doxycycline and took a total of 4 weeks of that med but yet many symptoms persisted and my legs burned constantly. I researched and read whatever I could get my hands on.... I had to sort through SO much and basically became my own doctor and researcher.... I discovered that the neurological damage(parethesia) may take months or longer after finishing antibiotics because the nervous system regenerates only one or two milimeters each day and needs time to heal. I also found that time and cold helped my legs. Once winter and the cold weather arrived my legs gradually improved but I was left with swollen and sore ankles. I was told that a LLMD(LYME LITERATE MD) was the person to see so I made an appt in Aug with my first LLMD. I saw a total of FIVE Lyme friendly or LLMD's... What an experience that was!! I will write more about my experiences with the LLMD's in future blogs.

Swollen Ankles

Do I still have Lyme disease or not??? My ankles have been swollen for over a year, never had that problem before Lyme disease.