could this be lyme??

I have been having issues for about 15 months. It started with abdominal bloating after eating even a very small amount of food. I had constipation. Weird constipation where excrement is not hard and rocky, no matter this size or consistency it takes great effort to pass and I never feel empty. That progresses to burning sensations in my arms then legs that at times will encompass the entire body. I have had chest pains. I have a now constant pain under my rib that started on the left side and is now on both sides and i will get pains above my kidneys (seems to high to be kidney stone, but i thought i had one but it cannot, well should not be after 8 weeks) Eating does seems to make those side pains worse. I thought I had gall bladder disease but u/s showed no stones.

My PCP ran tests that showed high CRP and positive rheumatoid factor and they did a test for Lyme that was like minimally over the normal limit. He did not tell me this i had to get a copy of my test results to take to the Rheumatologist and saw it was bolded and had a H by it. It was just barely high. I cannot remember what test it was...

So newly added with all the previous issues the last 2 days i have had muscle weakness in my arms and legs. I actually went to the ER a couple days ago when my muscles began twitching and my muscles were have spasms where i could not write my name or lift my shoulders. The ER dismissed it as neuropathy and sent me on my way. Today I have leg weakness, like they are tight, and heavy to lift. I am not paralyzed or anything but its noticeable and very scary. For a coulple weeks too i have been having twitches. Like i can sit and watch a muscle twitch. It moves all over. leg, arm. even in my guts. I feel shaky sometimes and like my heart is fluttering in my chest.

Oh and when i went to the rheumy in july i had no arthritic pain. None at all... I had some neck pan which i thought was from lifting a heavy press alone, dumb move i dropped it as it was too heavy and then had neck pain. but nothing else. The wheels kinda fell off there about aug and sept after a trip to cedar point amusement park which took me 3 weeks to recover from and a trip to the zoo, i have joint or muscle pain or maybe both in my shoulders, arm, and knees. My knees actually look different now with 3 lumps on them. I had a 2nd rheum appt and he could not even be bothered to look and just wanted me on some powerful drug. He did not even go over my blood tests with me or say i think you have this this or this. I have a Rheum appointment monday with a new rheum. I have a neurologist and i called and he is out of the country for 3 months. Nice. I had had only 1 appointment with him and he sent orders for a MRI to my PCP because he will be gone. My PCP, whom i loved, as of lately i was not happy with my care, but then I found out at the ER he has been in and out of the office because he has esophageal cancer. The guy in the ER said he is not doing well and not likely to make it. Shocking news to me he is only 45 ish. So I need a new PCP and just called to get one at the cleveland clinic and am waiting to hear back... Thats my doctor mess as i feel I need fast care quick and I have to start over.

I have had a full gastro workup, cardio, endocrinologist, rheumaologist and am in the midst of the neuro... all they have old me is i have inflammation. I was accused of being a smoker by the cardio, he rolled his eyes at me like i was lying... I wont go back to him of course... Does anyone have any ideas???? As far as i know all my autoimmune tests were normal except CRP and RF... Thanks for any help. Not having any answers after 15 months is so stressful and scary...

ETA: i have lost 20 lbs in the last 7 weeks. I have lost about 50 in the 15 months without trying if that is useful info..thx

Post Edited (KayC04201231) : 11/11/2011 1:12:47 PM (GMT-7)

Hi Kay,

Welcome to the forum!

Gosh, sorry you have had such trouble getting any good help from your doctors. How frustrating.

Well, lets back up to your Lyme test results. Even a slight positive should be looked into further. Our immune systems get suppressed by the Lyme bacteria so the antibodies the test looks for aren't produced in enough numbers to register properly.

What I would suggest is that you consult a Lyme Literate Doctor. They will be able to look at all your symptoms and history as well as run more accurate tests.

Here are some contacts:

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read toget you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You can also start a new thread entitled, "Looking for LLMD in (name your nearest big city or region you are willing to travel).

Let us know how it goes.

Kay,

There are some Lyme Literate Doctors who accept insurance but they are few and far between. That is because most insurance companies espouse the CDC standards towards Lyme disease and refuse to pay for many treatments that help Lyme patients. So the doctors choose not to be bound by those limitations.

You can get standard testing through your primary care physician. This is usually the ELISA test. If that shows a positive result, then they automatically do a Western blot test. These tests are not very accurate and they are often misinterpreted by general practitioners. However, it is a first step.

For more accurate testing, most Lyme Literate Doctors use Igenex labs. Their test is more sensitive and seems to pick up more of the different strains of Lyme and the co-infections that go along with it. While you can order the free kit directly from them, you will have to get a medical professional to draw your blood and submit it.

There is a new test ... check it out www.healingwell.com/community/default.aspx?f=30&m=2255823

While I know it is hard to manage finances, I would like to encourage you to consider this a real priority and not put it on the "someday" list. Lyme left untreated can effect every part of your mind and body and make it impossible for you to function. Sooner is much better than later in dealing with this.

Keep us posted on how you are doing.

Hi Kay,
Maybe you should look into "Lymetap" - www.lymetap.com/ Igenix Labs has created a way to help those who meet their financial requirements. Here is their description of their program: ..."is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need."

Igenex is one of the most reliable labs for testing for tick-borne infections.