OMG I could just scream at my doc. One week I have Lyme's this week I don't!

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therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 10/27/2009 7:15 AM (GMT -7)   
Last week my doc said my Western Blot test ( I hope I'm saying that right) showed two bands (whatever that means) and he told me that SUGGESTS CHRONIC LYME'S, get some Cats Claw and try it. I tried it and I don't notice any great improvement, maybe less inflammation in my rectum and colon. I was diagnoised with ulcerative colitis 4 years ago, many symptoms, tired all the time, bleeding, pus, mucus, joint ache you name it. So he said because I didn't see a dramatic improvement on Cats Claw, then no I don't have Lyme's Disease. Shame on me for telling people that I have it, but how can he say I don't because Cats Claw didn't work? What do only two bands suggest then? Any help would be great.
Thank you
Very mild left sided (could have fooled me with the "mild")  UC. Started and stopped LDN ON 1/25/09 to mid May no improvements. Supplements: Probiotics, multi, iron, caprlic acid,  trying a new peptid replacement therapy, started Lialda on 8/31/09. Getting IV of vitamins and minerals for 12 weeks. I take lomotil as needed.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/27/2009 7:37 AM (GMT -7)   
Hi therearemiracles,

1st- do you know which bands you were positive on? And which lab your Dr did the test through? I'm actually surprised by your post, mostly because a Dr who would consider chronic Lyme with only two bands positive would usually know enough about Lyme to know that you wouldn't be able to notice anything in a week (unless you did cats claw for more than a week?)

Having two bands positive IS enough to suggest chronic Lyme disease, however, most Dr.'s know nothing about Lyme disease, and so won't even consider it, let alone treat it. What you should do is try to see a Lyme-Literate Dr (LLMD). They know about Lyme disease, and will be able to diagnose and treat you if you have it.

I wouldn't think one week of anything would be enough to determine if you had Lyme...and I could be wrong, but I thought Cat's Claw was for a different type of bacteria that tends to come along with Lyme (Bartonella). Someone else might know more about that though.

Finally- when you first start treatment for Lyme disease (natural or antibiotic), you could actually feel worse, as the bacteria die off and flood your body with, well, dead bacteria. LLMD's are prepared for this, and will know what it means.

Best of luck!

Nicky

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 10/27/2009 7:43 AM (GMT -7)   
Hi Nicky,
I have an appt in December with a doctor from Michigan, he doesn't do any reporting to an insurance company so it's automatically like $200 out of pocket to meet with him. I guess he himself has/had Lyme's so hopefully he can help me.
 
My doc said I have chylmadia nd phenomonia bacterias (forgive for the spelling errors) so maybe he thought Cats Claw would help that and I would feel great. There was yeast as well in my stool and were treating that with RX. He said if I feel great on this type (I've been on Diflucan and S****ex in the past) then I should stick with it b/c it's getting to that strand of yeast.
 
I'm not please at all with him right now, he's can't remember my case or my last conversation with him from week to week, he admitted "he has a lot of patients" I could just cry.
 
I'll keep my appt with my new doc and see what I get from him. I'm going to continue on my Cats Claw and Allicin (garlic).
Thank you
Very mild left sided (could have fooled me with the "mild")  UC. Started and stopped LDN ON 1/25/09 to mid May no improvements. Supplements: Probiotics, multi, iron, caprlic acid,  trying a new peptid replacement therapy, started Lialda on 8/31/09. Getting IV of vitamins and minerals for 12 weeks. I take lomotil as needed.


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 10/27/2009 11:22 AM (GMT -7)   
I think most on this forum would agree that if you had a positive or ind repsonse on your western blot for a Lyme specific band, the Lyme connection needs to be checked out.
 
Do you have a copy of your labs?  Is your chlamydia pneumonia (Cpn) a chronic infection with elevated IgA?
 
I have both Lyme and chronic Cpn infections.  The Cpn is another bacteria that has three life forums.  A "free" form, a form where it enters your cells so it can hide from antibiotics (and rob your energy from within your cells) and a cyst forum.  It needs a combination of antibiotics to fight all the three phases.  The meds are more like TB meds.  Flagyl is effective as a cyst buster for Cpn just like it is for Lyme. 
 
In it's chronic form, Cpn is very difficult to get rid of.  It took me a while to find the info so I'm going to "over-information" you so at least you'll have to info if you want to research it.  Cpn is associated with chronic fatigue, fibro, hardening of the arteries, Alzheimer's, and I think IBS.
 
Here is a web site that has good info on Cpn and its treatment:
 
 
and an interesting article that I found:
 
 
Hope this helps.  Are you out of energy all the time?
 
 
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 10/27/2009 11:27 AM (GMT -7)   

Hello and thank you for writing. Yes I'm tired all the time. I'm sticking with my current protocal Cats Claw, Allicin, probiotic and today I started a yeast pill RX my doc said hopefully this will take care of the one type of strand of yeast that I have. I'm praying something will improve.

I will get those test faxed to me and I will recheck your post to see where my levels are at.

Thank you


Very mild left sided (could have fooled me with the "mild")  UC. Started and stopped LDN ON 1/25/09 to mid May no improvements. Supplements: Probiotics, multi, iron, caprlic acid,  trying a new peptid replacement therapy, started Lialda on 8/31/09. Getting IV of vitamins and minerals for 12 weeks. I take lomotil as needed.


strongmom
Regular Member


Date Joined Aug 2009
Total Posts : 79
   Posted 10/27/2009 8:10 PM (GMT -7)   

about the " now you have it, now you don't" thing,  I think we've all been there.  I had a bullseye rash nearly 6 inches across,  of which I took photos to show to the infectious disease doc. 

Seeing the photo he said,  yes,  classic Lyme bullseye rash,  and as I listed my symptoms he nodded yes to every one of them. 

He then stepped out of the room to consult with a colleague about how to proceed with treatment,  then came back in and told me the 2 weeks of Doxy my doctor gave me should have killed everything including all coinfections and I would just need to deal with the lingering symptoms "which could take some time to go away."  He said there was also no way I could have had Lyme because if I did,  I would be the FIRST EVER REAL CONFIRMED CASE HERE IN COLORADO.

It's almost comical,  but also frustrating how docs can be staring right at a massive bullseye rash and tell you it's not Lyme. 

But yes,  it happens a lot.  Lyme is kinda like that relative who went to jail that no one talks about.  The docs don't acknowledge it even exists.

Yeah,  I just got hungry while I was sleeping and tried to bite my own thigh and gave myself a 6 inch hickey.  Happens all the time.  I really shouldn't go to bed on an empty stomach.

Well at least the snow is going to kill or make dormant all those little biting bugs,  for a while.


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 10/28/2009 6:36 AM (GMT -7)   
Hi Strongmom,
 
You have the GREATEST sense of humon, you made me laugh about the relative in jail comment.
I have a appt to see a LLMD doc in December.
 
Bless you!
 
Linda
Very mild left sided (could have fooled me with the "mild")  UC. Started and stopped LDN ON 1/25/09 to mid May no improvements. Supplements: Probiotics, multi, iron, caprlic acid,  trying a new peptid replacement therapy, started Lialda on 8/31/09. Getting IV of vitamins and minerals for 12 weeks. I take lomotil as needed.

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