IDD Says no Lyme just sleep apnea! WOW!

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SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 3/5/2009 4:29 PM (GMT -6)   
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.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/5/2009 4:45 PM (GMT -6)   
you might very well have sleep apnea this is discovered with a sleep study and can be treated with a mouth piece (NOT CPAP), but if I were you I would find another doctor to treat your lyme symptoms! Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/5/2009 5:11 PM (GMT -6)   
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
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 3/5/2009 5:23 PM (GMT -6)   
One simple observation when reading your post. "You showed improvment on antibiotic therapy." Since when do antibiotics help with sleep apnea. Duh!!!! D

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 3/5/2009 5:46 PM (GMT -6)   
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)


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 3/5/2009 7:31 PM (GMT -6)   
A spinal tap is a serious thing to put your body through. I have also read that you can have chronic lyme and it will NOT show up in the spinal tap. I would try to find an LLMD and they will understand why the antibiotics are helping. I just had my doctor of two years tell me that he has "decided" I didnt have Lyme. Too bad we  just cannot "decide" not to be sick. The doctors make me crazy.... D

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 3/5/2009 7:49 PM (GMT -6)   
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

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 3/5/2009 7:57 PM (GMT -6)   
I have had LD for 28 years and my spinal tap showed nothing.AND... if I remember correclty, Spinals are not used to rule in LYme. It is used to rule out otjer disorders.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 3/5/2009 9:27 PM (GMT -6)   
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
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 3/6/2009 6:17 AM (GMT -6)   
My daughter had the lumber puncture done and it showed that she was perfectly healthy. She definitely had Lyme. I wouldn't put yourself through it. You could have some side effects from it, too. I wish some of these doctors could realize how ridiculous they sound.

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 3/6/2009 6:52 AM (GMT -6)   

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


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/6/2009 9:42 AM (GMT -6)   
I would be willing to bet that this doctor gave you a bill for an "extended visit" after you spent the time trying to educate him/her, which is useless.  You need to get yourself out of there and to a LLMD as soon as possible.  Your sleeplessness could be due to lyme or bartonella, both of which do not always test.  There are 30 strains of bart and BLO and only 2 strains are tested for at the labs.  If you allow yourself to be shuffled around the system, the next thing you know you will be put on steriods for RA which will make it nearly impossible for your immune system to fight off the bacteria.  When a doctor tells you two weeks of abx will cure you, run out the door.  Your future treatment may not be completely covered by insurance but in the long run it will be much cheaper to get to the LLMD now rather than later when you need an IV.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/6/2009 1:02 PM (GMT -6)   
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.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 3/6/2009 2:38 PM (GMT -6)   
Your symptoms also sound like Babesia. I would get checked for co-infections and heavy metal toxicity and definitely go to an LLMD. Believe all when they say, they have been down this route before, including me.

Best,

John

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/6/2009 5:06 PM (GMT -6)   
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
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 

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