Lymes disease

[mommyjamieof2]

I have seen alot of posts about people being tested for lymes thought I would share what I was reading on Dr Kent Holtof's website.  I did not know mosquitos can carry lymes!  My husband and I are and have been hunters for a long time and have had more then our share of mosquito bits..  According to them it is hard to diagnose and treat :(

Because the symptoms are so variable, patients are usually not even considered for testing or treatment. Even if testing is done, however, standard testing will miss over 90% of cases of chronic Lyme disease. The standard testing is an immunoassay test of IgG and IgM antibodies and then a Western blot for confirmation. The problem is that these tests were designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criteria was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data). If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection and a low false-positive rate.

http://www.xxxxxx.xxx/topics/lyme-disease/lyme-disease-and-cfs

Anyone here have any experience with lymes disease?

[mommyjamieof2]

Wow thank you for the information I am so sorry you have suffered for so many years.

I have had this for about the last 6 years but not as severe as you.  My husband has been diagnosed bipolar has many of the same problems as I do fatigue, sleeping issues, bad muscle and body aches, ect.  He has had a few 5-6 ticks tons of mosquitos and I had 1 tick I saw on my sweater I left it in the mountains lol but that doesn't mean I didn't miss one.  Tons of mosquito bites also.  You know it really doesn't matter what you do you just can't seem to avoid them if your a outdoors person and we have tried many things and even clothes arn't the answer I have been bit through clothes many times...  And now its really hard that we have kids because they are at risk well everyone is with using deet but the alternative is not any better.  UGH as if I was not paranoid about it enough.

[Lori707]

About 24yrs.ago I was feeling very ill and went to the ER. While getting undressed the nurse noticed the typical huge bulls eye rash. Had Lymes. Took antibiotics for 2 weeks. Then about 2-3yrs later, I started not feeling well but not as bad as the first time I had Lymes. Didn't have a rash. First two tests came out negative. Third came out positive. Received 3 weeks of IV antibiotics daily. Felt better. Fast forward about 20yrs. Moved to another state about 17yrs ago. A couple years ago I started to not feel well. I told my husband that I think I have Lymes disease. I got really sick. Neurological problems and inflammatory arthritis in all my joints. I asked for the Lymes test for the past 2 1/4 yrs and NO doctor would give it to me. I was hospitlized twice for a time and went to many many doctors:internests,2 infectious disease doctors,4 rheumatologists,3 gastrointerologists,several neurologists and 3 endocronologists. All said I didn't have Lymes and wouldn't give me the test. About 4 weeks ago I brought my husband along to a doctor and pleaded and cried for the test. He said okay already and ordered it for me. Then I got a note in the mail from that doctor telling me that my lymes test came out POSITIVE! (He couldn't call?). The next day I took that note along with my lab results to my infectious disease doctor and gave him the paper work while I reminded him that I started asking him over 2 years ago to test me for Lymes. I was so mad! A couple times I had been diagnosed with rheumatoid arthritis and fibromyalgia. They wanted to give me very toxic meds but I refused to take them.

Now I have a Picc Line inserted in my arm that goes to the heart and that's how I'm receiving my daily IV treatments.

My liver and pancreas enzymes get elevated and my endocronologist believes I have Hashi. I've seen a few people with Lymes that has Hashi.

mommyjamieof2: You may want to also ask for pancreas enzymes level blood test.
                          - Amylase
                          - Lipase

The Lymes Essay IgG/IgM is only 65% sensitive as per what I read on the web. The Western Blot is more sensitive. But, a person can have Lymes with negative results.

I believe that I was under treated years back and went into remission. The longer you have Lymes, the harder it is to get rid of it.

It's important that you go to a specific Lymes disease doctor. After I'm finished with my current IV treatment, I am going to that type of doctor. They're difficult to find.

Good luck everyone and feel better!

[mommyjamieof2]

darn it my post is not there with the address replace xxx with www . holterfmed . com

Take out spaces

[mommyjamieof2]

I am wondering if this could infact be the cause of al my problems I just can't seem to get rid of fatigue and muscle aches and my thyroid labs are pretty good also at one point in reading about it I came across liver enzymes may be elevated and mine were with the last test.  So I am going to pursue this further and hope for a answer.

[healthy2009]

I was diagnosed with Lyme in Jul/09. In the starting of 09 I was feeling worse, I know something wrong with me but could not figure out what is bothering me. As I am Hashi, my doctors always blamed my thyroid. But I was not responding to my throid medication even though I changed my diet and life style.
My conventional Lab test showed I have Lyme.

I was tested for Western Blot. My lab results are below.

Lyme, Western Blot, Serum
Lyme Ab IgG by WB:
IgG P66 Ab Present
IgG P41 Ab Present
IgG P39 Ab Present
Lyme IgG WB Interp Negative

Lyme Ab IgM by WB:
IgM P41 Ab Present
IgM P23 Ab Present
Lyme IgM WB Interp Positive.

Lyme IgG/IgM Ab 1.11 H   Ref range:0.00-0.90

Thank you.

[mommyjamieof2]

there are other articles there for lymes if  you search the website actually alot of alot of different information.  This is the Dr Mary Shomon did a interview with.  If you don't know you can add her on face book and watch all the articles and interviews.

[LazyMoose]

Your link showed up like this: www.xxxxxx.xxxtopics/lyme-disease/lyme-disease-and-cfs. That happens here on some links.

What words go in the x's, and space them apart- the main web site. (If you copy and paste the whole thing, it will most likely be x'ed out again).

thanks

[LazyMoose]

Interesting. For those that are wondering, one of the same symptoms of Lymes and Hypothyroidism is muscle fatigue and pain.

I thought it was just from deer tics (the tiny ones).

I have had Hoshis for years, and while still experiencing muscle pain on only T4 meds, one of the many other tests I had was for Lymes dissease. Since I'm a avid outdoors person and live in a state where Lymes is getting more common, I was tested years ago. They dont hesitate testing people here for it. Out of curiosity I'll look to see what test they gave me, I was negative.  I do know that I dont have it, since my muscles feel much better with the addition of T3, thats what I needed all those years. (Another story).

I know two people that have Lymes disease. One has been on the treatment plan for two years, and just started getting better in Aug - Sept 09.