Chris L - please read

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matt0002
New Member


Date Joined Sep 2008
Total Posts : 8
   Posted 12/12/2008 3:15 PM (GMT -7)   
hey chris L

matt here we were talking during sept, oct, nov, over email about our similar symptoms like dryness and whatnot and i kinda feel outta the loop for about a month and just tried to email you today to ur comcast email and it says its not working for some reason ... any thoughts. Lemme know if uve changed ur email or something b/c i dont log on to hear that often but am really interested to see whats been going on with u as last time we chatted u were trying out ADH shots or something a like.

the message said the following anyways:
sorry i kinda lost touch.

just wondering whats going on with u and ur lyme.

what
meds are you on and have u seen any change in ur symptoms? - how did u
originally get diagnosed again - from igenex or what? Any change in ur
dry/sensitive skin?

im still at a stand still b/c even though i had positive IgG and IgM from Igenex my LLMD isn't convinced.

I did finally get an ADH blood test and i go back to see the doc next
friday so we'll see what happens. What other tests should i ask him
for to try to sway him towards lyme.

My MRI came back normal but
I'm thinking of asking him for a CD57 test, a SPECT scan, and a C3 and
C4 test. Did you ever have any other sort of test that came back
abnormal.

Kinda upset b/c he doesn't believe me test for some
odd reason even though he stocks Igenex test kits in his office here in
Ontario.

What other symptoms did u have again ... my main ones
are headache, fatigue, very red/sensitive body skin and facial skin,
dry skin, new chemical sensitivities/allergies, postural orthostatic
tachycardia, gastritis, dry mouth, dry eyes and joint pain. Argh its
really annoying with the dryness b/c its winter and things are getting
worse.

Hope to hear from you soon,
Matt

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/12/2008 5:45 PM (GMT -7)   
9 people have read this.... none of them ChrisL
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 12/13/2008 6:38 AM (GMT -7)   
Hey Matt!!!!
 
I'm sorry I fell out of touch.  I just recently moved from IL to DE and I'm still trying to get adjusted and recuperate.   In the move I did get a new internet provider, so my email address did change.  I had plans to catch up with you once I got settled in, but getting settled in is taking longer then I had anticipated. 
 
As far as my Lyme goes, I still have it.  I really haven't been able to undergo serious treatment because of the effects of my GI system.  All the ABX I have taken so far have increased the pain in my GI system so I never really have been able to take ABX for more then 5 days.   I was seeing an EXCELLENT LLMD in WI right before I moved and he was going to start me on IV ABX and TPN (all nutrition through the IV).  Unfortunately I had to move away from this doctor so I could be back with my family.  But my WI LLMD offered to work as a team with anyone I found out here.  Even better, two days before I was going to move, he called me to let me know he found a LLMD in my area that had alot of knowledge in the area the lyme was affecting me most, the GI tract.   I'm starting to wish I did move.  turn    Basically, what my WI LLMD thinks I have is what a doctor named Dr. Sherr has coined as "Bell's Palsy of the gut," which means the lyme has paralyzed part of my GI tract and muscle structure around my abdominal area.   After 2 years and over 30 doctors in various fields, I have never found any medical theory that describes what I have closer to this.  More info can be read at http://www.thehumansideoflyme.net/viewarticle.php?aid=62  Other interesting information on her website shows that low ADH is very common in lyme patients. 
 
I had my first appointment with a LLMD in my area here in DE and he is starting me on Bicillian shots.  Basically, we are trying to bypass the GI system to get the medicine in my body.  It makes sense and I guess its a good step to take before I go with the IV ABX and TPN.   My WI LLMD also prescribed me Gamma Globulin to strengthen my immune system because I now have a current Epstein Barr infection and I've started developing antibodies to my muscles.   Once I get a few weeks of the Bicillin shots under my belt, I'm going to start the GG.  Unfortunately with the reactions I have been having to drugs (and many foods) I cannot take the chance of starting two medicines at one time. 
 
If I recall your test results properly, your tests were MUCH more indicitive of Lyme then my tests were and I have not had any of the three LLMD's I've seen doubt that I had lyme.  I wouldn't ask for any more tests, I would seek a second opinion.  If you like this doctor, you may give him the benefit of the doubt and frankly ask him what direction he is taking your work up in if he does not believe it is Lyme.  If he doesn't give you a satisfying answer, I would seek a second opinion. 
 
As far as your ADH blood test goes, I hope I can save you some time and trouble.   Even if your ADH comes back low, your doctor is going to tell you it is prefectly normal to have a low ADH blood test result.  The doctor will most likely further explain that the test is a snap shot in time and that your ADH changes all day according to the liquid and electrolyes you take in.  Bascially, your doctor will probably dismiss the report, even if you did not take in any fluids for 12 hours before the test.   The best test for ADH is the water deprivation test.  Basically, its an all day test where you are not allowed to drink or eat.  They take blood every hour and check your electrolytes and ADH.  I had this done and I came back boarderline for diabetes inspidis, which is water diabetes.  They allowed me to try the medication for it, which can be dangerous if you don't have true DI, but I could not tolerate it because of my increasing sensitivity to drugs in my body.  They also felt that blood tests after the medicine indicated that my case wasn't strong enough to continue the medicine.  It can bring the sodium down in your body too far and case brain damage.  In any event, I had to fight months to get this test and doctors rarely test this way unless you have an exaggerated, clinically definitive case of DI showing before the test.  I have spoke with others on this board who have similar issues with water balance and while they too have low ADH, they did not have clinical DI.  Given the research from Dr. Sherr's website, I am now very inclined to believe it is a symptom of Lyme.  That being said, you have to pursue the DI angle as you see fit.  You may have it, after all, as I am not your doctor.  I would just do some research into it and see if you feel you have a clear case or not. 
 
Here are my current symptoms:
 
Chronic constipation (regardless of diet or supplementation)
Inelastic, dry and highly sensitive skin
Inelastic and weak muscles (They pull very, very easily)
Weak lower back (not painful, but feels like I'm going to throw it out at any minute)
Joint problems (they crack loudly and feel unlubricated)
Increasing intolerance and sensitivity to foods and drugs (you wouldn't believe my diet)
Dry eyes and nasal passages
Paralysis of my left abdominal area
Painful feet if I stand on them for more then 15-20 minutes
Episodes of tingling around my entire body
Ringing/white noise in my ears
digestive issues ( I did have gastritis)
Bruise easily and then it takes over a month to heal and go away
Spine stiffness
Pain in my coccyx/rectal area. 
 
Anyway...I hope that answers all your questions.  I'm going to send this to you in email as well so that we can keep in touch. 
 
Take care Matt!
 
  

2 tired for 30
Regular Member


Date Joined Nov 2008
Total Posts : 34
   Posted 12/15/2008 9:23 AM (GMT -7)   
Hi Matt,
Do you live in Ontario, Canada? Are you seeing Dr. B? I'm waiting to get an appointment with him.

tropicalsun
Regular Member


Date Joined Jul 2006
Total Posts : 407
   Posted 12/15/2008 3:31 PM (GMT -7)   

Hi guys, I just want to give you some advice to hopefully avoid you wasting you time. If you are going to Dr. B chances are you will get no where. He is going to find every excuse to say its not lyme (or coinfections) even though there is a positive result right in front of his face.  I highly doubt he will do a CD57 test since he does not believe in it plus they don't even do it in Canada. He will say symptoms that are very well known to be caused by lyme, that they are not.  I would have to say they majority of stories I have heard from Canadians is that they ended up having to go to the US for proper treatment.

Good Luck!

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