IDD Says no Lyme just sleep apnea! WOW!

So I went to see a IDD today because my doctor refered me for IV antibiotics. I went to the Uconn Health Center in farmington CT. The doctor said not only does she not believe I have Lyme but chronic lyme does NOT exist and even if I had late stage numerological Lyme the maximum duration of antibiotics are TWO weeks ONLY no matter how severe. I told her that made no sense at all and treatment duration should be based on how the patient feels along with the duration and severity of their illness. She went on to say that all my symptoms may be from sleep apnea but we need to wait on testing. Anywho I brought in all kinda of evidence of Lyme research and we talked for about 45 minutes. Afterward she complimented me on my medical knowledge and said that I really should goto medical school to be a dr. I don't think I have done this before so I am going to include a full list of my symptoms in order from the begining until now. I have been on orals for about 2 months with very good progress but still not anywhere near 100%


Here are my symptom list. Does this sound like sleep apnea to you?

In the beginning.

#1 Migraine headaches random or often triggerd by smell, stiff neck, body ach and light fatigue.
#2 Consistent severe constipation, mucus in stool abnormal consistency.
#3 Moderate- severe sleep problems, not being able to fall or stay asleep
#4 Extreme fatigue, needing to nap or rest frequently during the day, Waking up more tired then when I went to bed
#5 Constant moderate – sever lower and mid back pain all the time
#6 Pain in the testicles, pain in the right and left side abdomen, possible prostate enlargement/infections frequent urination, trouble starting urination, waking up 6 times a night to urinate. Diagnosed with prostatitis & chronic prostate infections with cause unknown.
#7 Extreme morning stiffness, pain and body aches


Many months into the illness more symptoms arose and the condition became more debilitating.

#8 Joint pain that moved to different spots in the body eventually all over body
#9 Feeling very out of it, memory loss, confusion
#10 Constant muscle twitching in every part of the body.
#11 Heart racing and palpatatons
#12 Very weak muscle strength, legs or muscles that give out or shake
# 13 Very poor coordination and loss of balance
#14 Vision problems, trouble focusing eyes, blurriness, vision loss
#15 Hearing problems, ringing in the ears
#16 Extreme cold sensitivity, chills while sweating at the same time, night sweats.
#17 Tingling sensations and numbness in face and upper back
#18 Muscle cramping and aching
#19 Often joints become temporarily unusable due to pain sometimes leading to the inability to walk or put weight on them.
#20 Light and sound sensitivity
#21 Nausea on a weekly basis
#22 Eyes need to be rested during the day. Eyes always feel like there is something in them and do not feel better unless rested.

All symptoms get much worse when weight is put on my lower back from sitting. I cannot sit for more then a few minutes during the day without consequence. Alcohol even in very small quantities also makes symptoms much worse primarily muscle twitching, body ach, back pain and stiffness.

At the beginning of my little Lyme journey I was told I probably had a sleeping disorder too. Even though I told the doctor I was bit by a tick, had a bulls eye rash, and the developed Juvenile Rheumatoid Arthritis! Sorry you had to go through something like this again. amey

Dowa said...
One simple observation when reading your post. "You showed improvment on antibiotic therapy." Since when do antibiotics help with sleep apnea. Duh!!!! D

well.. that's what I told her but she did not want to hear it. On antibiotics I am seeing huge improvements including nearly eliminated heart palpations, eliminated muscle twitching, greatly reduced fatuige and reduction of body pain. It is not just a little better it's more like it's a huge improvement. She said maybe it was just a placebo effect and or the doxy reducing inflammation. She wants me to do a lumbar tap looking for Lyme. Should I do it? My WB was negative but it's well known to be unreliable (testing in general)

Post Edited (SickInCT) : 3/5/2009 5:18:31 PM (GMT-7)

If I remember right there is only an about 30% rate of positve spinal tap test result with lyme infection.
As Dowa said the spinal tap is a serious thing. A llmd would be the best solution. Nobody has time and energy to treat a disease as serious as lyme with a doc who is not willing to respect research results of the illness we suffer from. This all is really kind of too annoying. I think those docs will not move until they have to deal with lyme in their own families.
Take care! dorit

The spinal is dangerous and not worth the risk. and as she said above not all that effective.
The reason the Dr.s are saying that there is not a cronic lyme...is not what they should be saying..but that the lyme had ruined your immune system and so that now..you have every immune disease symptom.
You cannot stay on abx to fight things that can hide from them.
You need to build up your system and let it fight for itself.
Are you taking supplements at all?
Can you get chelation therapy near you?
With an IV or stint, you can rid your body of all the stuff, mercury, pesticides and all the other stuff that your body needs to get ride of.
Then your body will feel better. Feed it and take out the trash. :>)
Just a thought..lol

My son had a spinal tap and was positive on 6 bands of the IgG.  They (major teaching hospital on Long Island) told us he "absolutely " did not have Lyme Disease.  We were told by neurologists and ID doctors that the spinal tap was the definitive test, so we went ahead with it.  If I had it to do over again, I would not put my son through it.  From what I have read only 20-30% of people show positive on a spinal tap.

Take Care,

Karen

After being posative for lyme and co-infections an IDD insisted I have a spinal tap which I foolishly agreed to. Of course it was nagative for lyme and she declaired me well! DO NOT have it done if lyme is what you are testing for. It sppears you will most definately be wasting your valuable time with this doctor. Run don't walk far away from her.

It sounds like LD and maybe Babesia.  Get to a LLMD ASAP and get proper testing.  Even with Igenex you may not test pos.  If you do have Babesia I believe that has to be treated first then LD.  Good Luck.

KO