posted
I posted this as a review on the Doctor Board but thought it would be helpful to put here too. Much of these boards is dedicated to the Chronic Lyme suffer and I wanted to put some information/experience out there for some of the early stage people. Good luck to all of you in dealing with this (And sorry for such a long post).
A little history of my case to set the picture:
June 11th: Woke up with an average headache and all over achy feel. No significant fever or stomach ailment. Took shower to see if it felt better - each shower spray seemed to hurt. Decided to work from home on computer. Did okay but felt tired. Never slept but probably should have.
June 12th: Went to work. Still felt generally poor and tired but nothing terrible. Came home 2 hours early had dinner with family and then laid down & talked on phone for 1/2 hour. When I got up I had a very bed headache in the back of my head at the base of my skull. More ache in my upper back and neck beginning to appear. Start using warm compresses to relax the pain - helped but did not eliminate pain.
June 13th: Woke up very sore in the upper back and neck. It took 45 minutes of heat packs/aspirin/pain medication to get out of bed. Warm shower helped some and then off to work. Working outdoors that day. Felt better after loosening up in the morning but still tired and achy. No sense of any fever. Base of skull on right side became tender to touch - throbbed terribly when I bent over. Call my primary care physician and requested appointment for Lyme test...I was suspicious.
Saw PCP...took 3 vials of blood and discussed my symptoms along with outdoor lifestyle both personally and professionally. No fever at all. Dr. did not think it was Lyme do to lack of tick bite/rash and `Lyme makes you sore in the joints not the muscles' like I was experiencing. I requested Lyme antibiotics just in case and was told no. Sent me home with anti-inflammatory and said would be in touch - Lyme results could take up to 10 days to come back.
Went home still very achy. Found large rash behind my right knee around 8pm...looking very similar to EM rashes on internet. Called a friend who is a doctor and got immediate prescription filled that night for 100 mg Doxy 2x day. Took it upon myself to double dose to 4x day. Mild night sweats that night during sleep.
June 14th: Woke up sore in head/neck/upper back again. Repeated process from day before to get out of bed and off to daily activities. Rash grew in size and intensity from day before. Rested on couch watching TV in afternoon. Feeling better by early evening - cleaned kitchen and put kids through bedtime routine...definitely doing better. Head feeling a little foggy - possibly from all the reading about Lyme on internet
June 15th: Woke up feeling much better! No more aspirin/pain relief needed after this point. Barely sore. Possible 2nd rash on upper left hamstring developing? Much smaller and much less intense than original rash. Original rash starting to dissipate. Head still a little foggy? More severe night sweats that night about 1 hour into sleep...nothing the rest of the night. Not `drenching' sweats but enough to make it worthwhile to change t-shirt.
June 16th: Switched to taking Doxy 200 mg 2x a day - no problems with side effects. Woke up still feeling good. Energy almost back to normal. Some minor aches and pains `floating' around body. Nothing severe, nothing for long duration and possibly nothing I would notice if I was not looking for it - maybe just imagining it all. Head feeling clearer - able to work as engineer without limitations. The only definitive symptom is leftover mild neck and upper back ache. Original rash continues to dissipate and secondary (?) rash maxes out as 1-1.5 inches diameter, no where near as intense and angry as the original was. Night sweats again about 1 hour into sleep and then nothing. Intensity less than last night but more than first night.
June 17th: Woke up feeling good again. Same mild, temporary, possibly imaginary random aches throughout body. Legs feel slightly heavy from time to time but no problem carrying out daily routines like climbing stairs, taking out garbage and carrying kids around. Both rashes are pretty much gone - nothing left to photograph.
Saw Dr. G on June 18th...I called Monday orning and got a midday apointment two days later on Wednesday. Very casual office setting attached to a house. I was a little apprehensive going to a LLMD because I was afraid she would be too "Lyme Crazy" and over the top. Not the case at all.
She listened to my history for 20 minutes. Looked at the pictures of my rash and agreed that is was 'classic Lyme'. Gave me an excellent description of Lyme disease (I knew a lot from learning on the internet but there was a lot of information that she had that I did not). Answered the list of questions that I brought with me and did a physical exam.
I learned about the different blood testing that is out there. Apparently the Titer test is an antique and the 1994 Western Blot can only identify 3 strains of Lyme. I think there are about 15 or so.
She was also able to tell me what strain was going around NJ this year (not 1 of the Western Blot 3!). This is good to know because there are different abx for different strains. Doxy is the choice for the particular strain in NJ this year. Also learned that Babs has been very rare in this area for several years but that Ehrlicsios was prevalent - Doxy will get this one to.
So my blood is being sent to a Lab that can not only evaluate the strain but also the DNA and all potential coinfections. I do not know the lab name but have confidence in my doctor.
There are three different basic levels of Lyme infection: 1)Skin 2)Blood and 3)Tissue. If the blood test comes back negative I get 3 weeks of 200mg Doxy 2x/day. If it is level 2 and in my blood then I get a total of 6 weeks of treatment.
Based on my symptoms/treatment, Dr. G indicated that I have a 99.9% chance for total recovery. Bottom line - pay attention to your symptons, see a good doctor and get on the abx as absolutely as soon as you can!
$$$: Office visit and blood draw was $450. No insurance taken but they give you a bill to submit to your insurance company - not sure how that will go over. No charge for lab test - she said insurance will cover that...I will believe that when it happens. Otherwise another $200 or so. If it is not in my blood I will not see Dr. again and no more charges. If it is in my blood, I will have to go back for a followup after treatment is over to have my blood retested.
Dr. G is a very personable person and as a former President of ILADS I have faith that she is the right person for me to have seen. She typically sees 10-15 new 'bullseye' cases each week. I hope I never have to recommend her to any of my friends/family but would do so without hesitation.
I am going to post this on the Medical Board as well. A final thanks to Meg who sent me the name of Dr. G and got me on the right track!
-------------------- Mark Posts: 9 | From morris co, nj | Registered: Jun 2008
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