This is the email that I sent to my family and friends tonight after my first LLMD appt today:
Today was my first appt with my lyme literate MD (LLMD). My appt was 6 hours long! It was very thorough. The Dr and his wife (the nurse)and their 2 sons, all have lyme.
He confirmed that I had correctly interpreted my Igenex western blot and I have lyme disease (Borrelia burgdorferi infection). I have had it for at least 21 years.
For the last 21 years my symptoms were called fibromyalgia. Dr's tell patients that the cause of fibromyalgia is unknown and they treat only the symptoms. I always knew it was an infectious cause...just had to find the right one.
I now know that lyme disease is the cause of my symptoms.
I had blood drawn today for testing for other tick borne infections through Igenex lab, plus other labwork.
It is common to have other tick borne infections such as babesiosis, bartonella, ehrlichia, anaplasma, rocky mt spotted fever, etc.
It is very possible that I have babesiosis because of the severe insomnia where one's mind races and won't turn off.
I had an EKG today and I have a right bundle branch block which is an electrical conduction disorder of the right ventricle. It won't kill me. It is possible that it could resolve with my lyme treatment, but no guarantee. Conduction disorders are common with lyme.
I got prescriptions for 3 different antibiotics which I started taking tonight. I am taking doxycycline, hydroxychloroquine (plaquenil), and azithromycin (zithromax).
A person is infected with lyme for life. It is very hard to kill the bacteria especially because it can hide in every organ and tissue of one's body and it can morph into cyst forms with no cell walls. The cyst forms are not affected by the antibiotics.
The goal is to eradicate it to the point where it will not cause symptoms. Months of antibiotic treatment are required.
If I have babesiosis I will have to take Mepron, an antimalarial drug.
Along with the antibiotic treatment, it is required that one follows a certain diet: no simple sugars, no processed foods, no fried foods, no pasta, rice, etc.
Basically I have to eat 1/3 protein at each meal and 2/3 carbohydrates that are low on the glycemic index, plus a little healthy fat such as olive oil. Must eat 5-6 times daily which I already do.
The lyme bacteria thrives on sugar, including foods that easily break down into simple sugars....bread, pasta, etc. Usually people crave the very thing that the bacteria need to thrive.
It is expected that my symptoms will worsen before they get better. This is known as a Jarisch-Herxheimer reaction. When the lyme bacterial spirochetes start to die off they release endotoxins which worsen one's symptoms. It's hard to say how long this will last.
There are also some supplements that I have to take:
sublingual melatonin and oral melatonin, probiotics, high doses of fish oil, 5 HTP, L-theanine, protein powder that you make into shakes with fruit, and creatine powder.
Exercise is also important, which I already do.
I will have follow up visits every 4 weeks until I am stable...maybe 6 months, then less often.
These are just some of the diagnoses that people have been given mistakenly when they actually had lyme:
fibromyalgia, chronic fatigue syndrome, multiple sclerosis, rheumatoid arthritis, ALS (Lou Gehrig's disease), Parkinson's disease, ADHD, Autism, Bipolar disorder, anxiety and panic attacks, depression, colitis, Crohns disease, etc.
The possible symptoms are many. They can range from muscle pain and stiffness or joint pain, to fatigue, insomnia, irritable bladder, migraines, chronic sinus infections, rashes, sound/light/smell/or taste sensitivity, trigeminal neuralgia, bell's palsy, numbness or tingling, stabbing pain or a pins and needles feeling, blurred vision or floaters, anxiety, depression, palpitations, swollen glands, back pain, difficulty thinking, memory problems, word search/name block, forgetfulness, tremors, seizures, ear pain, sore soles, sore throat, off balance/tippy feeling, hearing problems, vertigo, dental pain, neck creaks and cracks, neck stiffness and pain, nausea, constipation or diarrhea, chest wall pain or sore ribs, head congestion, unexplained chronic cough, air hunger, night sweats, muscle twitches and others.
It is important to note that different people have different symptoms. You don't need to have all of these symptoms to have lyme or other tick borne infections.
My main symptoms are insomnia, neck and shoulder stiffness and pain, lower back stiffness and pain, fatigue, mild sound and light sensitivity, forgetfulness, all-over muscular pain and stiffness, pins and needles and stabbing sensations, night sweats, muscle twitches, etc.
I also believe that my daughter and some other people I know have lyme. My daughter's main symptoms are overwhelming fatigue, insomnia, migraines, trigeminal neuralgia, chronic sinus infections, irritable bladder, muscle twitches, etc.
It seems that Dr's will only diagnosis and treat each symptom and they never recognize the big picture as possible lyme and other tick borne illnesses.
Lyme is an unrecognized epidemic. There are many, many people who have it and just haven't been diagnosed properly.
PA is an endemic state, along with NY, MD, CT, NJ, DE, etc.
Many of the young ticks are the size of a poppy seed, so you will never notice them. The adults are bigger.
There are alot of great online resources....just a few are:
I know this is very long...thanks for reading it.
Posted by seekhelp (Member # 15067) on :
I'm glad you finally got some answers and you are beginning treatment. Best of luck to you!!
Posted by Dekrator48 (Member # 18239) on :
Thanks seekhelp! It feels great to be starting treatment!!
Posted by Parisa (Member # 10526) on :
I'm glad you finally found out what is wrong with you. Very well written post!
Posted by Dekrator48 (Member # 18239) on :
Thanks Parisa! I am glad too!
Now I feel like I have alot of work to do...educating the public and health care providers in my community.
Posted by seekhelp (Member # 15067) on :
it's hard to educate those who won't take the earplugs out. Posted by Dekrator48 (Member # 18239) on :
Seekhelp,
You are right about that! I hope to buy the DVD "Under Our Skin" and arrange a showing, get a couple good speakers and then do alot of advertising to get people there.
My LLMD gave me the names of some people I can try to arrange as speakers.
I hope it works out.
Posted by Lymeorsomething (Member # 16359) on :
I spoke with your MD a few months ago, and he is the real deal--friendly and knowledgeable...
Posted by AmandaM (Member # 17466) on :
I see you live on the East coast. Would you be able to PM me your doctor? What does he charge for an appointment?
Posted by Hoosiers51 (Member # 15759) on :
I didn't know that having insomnia at night with the racing mind can be attributed to babesia. Has anyone else heard this?
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Dekrator48:
Seekhelp,
You are right about that! I hope to buy the DVD "Under Our Skin" and arrange a showing, get a couple good speakers and then do alot of advertising to get people there.
My LLMD gave me the names of some people I can try to arrange as speakers.
ORDER NOW!! they are stopping MARCH 15 !! of this and scheduling local filmings around the usa.
end of MARCH, NYC will premiere UOS ON "BIG SCREEN" ... they are working on having it shown in larger cities around usa.
SO ORDER IT NOW!! *****************
you can also view the current schedule of screenings coming up until MARCH 15 deadline!
i just saw that iowa was having one in grinnell jan. 24 ... news to me! no one has posted it here so i'll let those who decided to do have that pleasure!
outstanding letter to family/friends/us!
1 thing; ALL 50 STATES ARE ENDEMIC! all have lyme. ****************************************
endemic means 2 people in SAME COUNTY/STATE have been diagnosed w/lyme or co-infection.
i didn't know this either on terminology until 1 of members wrote about it! so don't feel bad; i'm still learning after 4.5 yrs. here!!
Posted by Robin123 (Member # 9197) on :
I'm happy for you! Wishing you all the best with your treatment! You are going to be a great advocate! Posted by scared08 (Member # 14695) on :
Dekrator48:
I am so happy for you!!! It feels so good to FINALLY talk to a Dr. that gives you his full attention, understands, gives you a diagnosis with a treatment, and validates all of the confusing symptoms that you've been having for years, huh!!!!!! Good for you!!
I hope you don't mind, but I'm going to save the letter you wrote; it really was wonderfully writtin!!
Please keep us all posted on how you're doing. You may need support and have many questions as you get into your treatment. Please post away as you probaby already know, there are so many wonderful people here for you!
I am sorry about your daughter. How old is she?? Do you plan to have her tested soon?
You and yours will be in my prayers and I'm so happy the you found a good LLMD!!
Posted by jenin98 (Member # 12617) on :
Can you email your doc? Jenin
Posted by Dekrator48 (Member # 18239) on :
Thanks lymeorsomething!
I was very impressed with the Dr's and nurse's (his wife) knowledge, patience and compassion.
He is highly recommended by me!
Posted by Dekrator48 (Member # 18239) on :
Hi AmandaM and jenin98,
I sent you a PM.
take care!
Posted by Dekrator48 (Member # 18239) on :
Hoosiers51,
Hi, it will be interesting to see how my co-infection testing turns out, not that it's always accurate.
My mind has only been racing for about 1 year, before that I could usually get to sleep at the beginning of the night, then awaken frequently and have trouble getting back to sleep.
My daughter also has the racing mind/insomnia.
Maybe a separate post on the subject would get more responses.
take care!
Posted by Dekrator48 (Member # 18239) on :
Thanks, for all the info bettyg! I better get that DVD soon.
take care!
Posted by Dekrator48 (Member # 18239) on :
Hi Scared08,
Thanks for your kind words.
My daughter is 29 yrs old. I think she has also had lyme for many years...probably at least 15.
I am going to her PCP appt with her on Feb 12 to explain why she needs an order for an Igenex western blot. She has an open minded PCP, so I don't think it will be a problem.
I will definitely keep everyone updated.
Thanks for your support.
take care!
Posted by Dekrator48 (Member # 18239) on :
Robin123,
Thanks for your support and kind words!!!
take care!
Posted by hcconn22 (Member # 5263) on :
Sounds like you found a very good Dr and got some good advice and treatment to start.
Posted by seekhelp (Member # 15067) on :
I too am interested in the LLMD's name, charges, etc. Posted by Vermont_Lymie (Member # 9780) on :
Congratulations on starting treatment! Sounds like you have a great llmd.
Best wishes for your improved health and thanks for the thorough posting. I have gained much of my health back after years of untreated lyme and babesia through treatment. Patience and lots of probiotics are needed for effective lyme treatment!
Posted by venus (Member # 16991) on :
Hi,
As Hoosier51 said, I didn't know those were symptoms of babesia. I was fairly certain that was bartonella much more so. That is at least what two LLMD have told me, and what I am being treated for more agressively.
I didn't test positive for any co-infections, but my doctor really thinks with the my cognitive problems that it is bartonella.
Best of luck. That was a great, clear e-mail. KMM
Posted by beths (Member # 18864) on :
Great letter-I may copy it, change the symptoms and send it to some of my friends!
Dekrator48 -Can you please PM me your doctors name? Thanks
Posted by Dekrator48 (Member # 18239) on :
Hi everyone,
hcconnzz: thanks, I think my LLMD is great!!!!!!
seekhelp: I sent you a PM
Vermont_Lymie: thanks for the good wishes and I'm glad you are doing so well!
venus: thanks, I'm anxious to see if he thinks I have babesia or not.
beths: feel free to use my letter and adapt it to your situation. I sent you a PM.
take care everyone!
Posted by Lymetoo (Member # 743) on :
Congratulations!! You're on your way to recovery! Posted by randibear (Member # 11290) on :
did you say six hours? man, he's great.
i hope you do well on treatment and keep us informed.
Posted by bettyg (Member # 6147) on :
dek, you know it's been a LONG TIME since we've had an upper post like yours on your 1st appt. with llmd !!!
so glad you shared it and a pm with me! xox
Posted by Dekrator48 (Member # 18239) on :
Thanks randibear, lymetoo and bettyg!!!
I feel lucky to be only 2 1/4 hrs away from such a great LLMD!
Posted by FancyRatFan (Member # 3088) on :
Sounds like you have a great find with your LLMD. He sounds very knowledgeable. I'm impressed you recalled all that information enough to share with us.
I was completely overwhelmed with my first visit and it wasn't nearly as long as yours.
I needed some of the points you made reiterated to me so thank you so much.
I know what a good feeling it is to be in the hands of someone capable and your LLMD sounds very capable.
congrats,
Fancy
Posted by METALLlC BLUE (Member # 6628) on :
Who did you end up seeing? I'm always looking for reports on LLMD's. PM me. Posted by Dekrator48 (Member # 18239) on :
Thanks FancyRatFan! I think I am lucky to have him for my LLMD.
Metallic Blue, I sent you a PM.
Posted by METALLlC BLUE (Member # 6628) on :
Got it. Great, this is the first report for this doctor! I'm very happy about the positive result. His treatment plan for you is very good.
What is the specialty? Emergency?
Posted by Dekrator48 (Member # 18239) on :
He used to be in Emergency Medicine but had to quit for 5 years when he was disabled in a wheelchair from Lyme.
Now he looks very healthy and treats just lyme patients.
Posted by METALLlC BLUE (Member # 6628) on :
This guy sounds really good. I need to find more reports on him. I don't have a lot of significantly competent people around your area. Obviously there are some, but your experience is on par with what I've seen from the best specialists further north.
Posted by PinchotGail (Member # 5066) on :
Great report!! I know who you are seeing, and he is amazing!!! So glad you got into see him. How long did you have to wait if I can ask?? Helpful for me to know down her in S.C. PA......
Thanks!!!
Gail York Pa Lyme
Posted by heatherliveswithlyme (Member # 14890) on :
Dekrater,
Good for you and horay for your wonderful LLMD.
It's so nice to read good news. Hope you start to get releif soon.
Posted by Dekrator48 (Member # 18239) on :
MetallicBlue: I think he's worth his weight in gold. His wife, the nurse, is great too. They told me to call them at home anytime if I need anything and gave me their #.
PinchotGail: I only waited 2 weeks to get in for an appt.
Heatherliveswithlyme: Thanks! I wish everyone had such a great LLMD!
Posted by lpkayak (Member # 5230) on :
whoa! i can't believe you wrote that letter after a 6 hr appt
your adrenelyn (sp) must be flowin
i remember when i got my first dx after 15 yrs of "fibro"---i was so happy too. you know better than i did that the hard work begins now and it won't be an overnight fix
i also have lived yrs with family in denial
i also would like to be able to copy that letter...did the info in it all come from the doc or is some your own research? so well written...
wonderful story and hopeful that good docs are starting ainstead of quitting lyme tx
thank you for sharing
Posted by Dekrator48 (Member # 18239) on :
lpkayak,
Most of the info in my email was from the Dr and his nurse, but some was from my research.
Yes, I think my adrenaline was flowing, along with my insomnia.
![[Frown]](frown.gif)
![[Smile]](smile.gif)
so don't feel bad; i'm still learning after 4.5 yrs. here!!
![[woohoo]](graemlins/woohoo.gif)