From Ulcerated Colitis Forum, blood work suggest chronic Lyme's

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therearemiracles
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Date Joined Dec 2006
Total Posts : 3487
   Posted 10/20/2009 1:14 PM (GMT -6)   
Hello, I was told I UC 4 years ago, but didn't buy it. I don't believe you just wake up one day and you have it. I have been my own health advocate and have spent over $30,000 in supplements, doctor and therapies, and have seen over 14 doctors to date. Well, today my doctors said my blood works suggest Lyme's Disease and two type of bacteria. I won't spell this right but I will try, Chylamidia (not STD) and Phenomia bacterias. My symptoms are bloody diarreah, more on than off, stomach cramps, moody, panic attacks, sometime pain in knees, muscles cramps in feet, fatigued, no concentration. I'm resistant to antibiotics, so I'm taking Allimed which is allican a part of garlic, thats working right away with the night sweats and rectal bleeding, and my doctor said take Cats Claw and I should notice a difference right away if its working or not.
 
I don't know what to say, I don't know why the blood work "suggested it" can't they confirm it? I feel relieved if it is Lyme's and I can start working on eradicated the bacteria.  Any thoughts or comments to help me?
 
Thanks for listening.
 
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.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 10/20/2009 3:17 PM (GMT -6)   
Hi Therearemiracles!!!
Welcome to the Lyme forum!! I'm really sorry to hear about your predicament!! I know that you will find grat support, & helpful & truly caring people here!!

I would suggest the very first thing you do is request a copy of the blood test they did that "suggests" that you have Lyme. A lot of docs think they understand

these results, when in reality, they don't. The worst part of that is all they would have to do is look it up, like we have had to do.

I think the only way to take control of your health is to be your own advocate, rather than just sitting back & go along for the ride.

As you listed your symptoms, I did notice a handful of them that I would at least be suspicious of a tick-borne infection. Although I believe we will all be guessing

unless you are able to get your hands on the results of that test. There are precious few labs that can give reliable test results for Lyme & other tick borne illnesses.

If a doc actually understands the scope of Lyme, & they get test results back 'suggesting' it's Lyme - they will usually start some kind of treatment right away.

In order to find a good LLMD (Lyme Literate Medical Doctor), you will want to start a new thread & in the title list the state & maybe even the general area

where you live & ask if any one knows of one in that area. There are other avenues to find an LLMD as well. You should be able to find all of that info & a lot of

important info in the thread "New to Lyme? Start here".

There are many protocols for treating Lyme, and quite a few to chose from that don't use antibiotics - since you said you are resistant to abx. You can get a pretty good understanding of a few on the "New to Lyme?" thread, as well.

I hope this will help some.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/20/2009 5:25 PM (GMT -6)   
therearemiracles,

Welcome to the forum! I'm sorry I didn't post earlier but I've been gone all day. I'm so sorry you have Lyme Disease but glad that you now have an answer to your problems.

Have you found a Lyme Literate Medical Doctor yet? Make sure you find a doctor that is an ILADS doctor. It's very important that you get the right treatment so you don't relapse months or ever years down the road.

Also read our sticky tittled, "New To Lyme?....Start Here!" It has very informative information in there.

Let me know what I can do to help you out ok?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/20/2009 5:29 PM (GMT -6)   
Something else I wanted to add is that it's very common to have viruses with Lyme Disease. Lyme Disease surpresses the immune system so we tend to pick up viruses like Epstein Barr, HHV6, CMV, Mycoplasma, and even other bacterias like Chlamydia pneumoniae. You may want to test for these viruses as well.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted Yesterday 2:10 AM (GMT -6)   
therearemiracles,

Your story is similar to my own in that I was diagnosed with Crohn's Disease and never felt the diagnosis was correct. An article you may find interesting is:
"'Bell's Palsy of the Gut' and other GI Manifestations of Lyme and Related Diseases"
http://thehumansideoflyme.net/viewarticle.php?aid=62

I encourage you to seek out a Lyme-Literate practitioner. The treatments given for UC are contra-indicated in those with Lyme, and could even make the Lyme/related infections worse.

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, homeopathy.

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