posted
Ok, I just got my first set of blood work back and it was negitive. I know it was done locally, but I just thought for sure I have so many system that it got to be lymes. Today I was in so much pain I had to go get a pain shot at the doctor as pain pills would not get with my leg and joint pain. Plus I have these never ending headaces, and my heart problems have my cadrio getting me another referal. I am freaking out as before I know it theres going to be nothing left for me, my hole life is gone. I am suck at home, all the time, I am in so much pain for the joints in the body. There is no way that os all due to my heart, and having POTS.
I have not had the western blot test down yet, but am worried it not worth havinh done now. I am still waiting on a call back for the LLMD in CO to see if it is worth the appointment to go see them.
I am just so tired of 6 years of getting dx, treatments and still being sick. I finally found info on lyme's read the systems and know I have 3/4 of them. I just keep thinking its got to be. But I am not sure if I should keep going for this, as my doctors want me to go see a nero, regarding POTS, and my headaces.
I am just lost, tired and feel like giving up! I am just afarid if I don't get to the bottom of this soon, what kind of life am I going to ever have if these systoms keep progressing as they have.
Sorry for venting, just don't know what to do!
Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006
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posted
dont just talk to an LLMD, see an LLMD. You are getting passed from specialist to specialist, like many on this board.
You need a doctor that will look at your entire body
Not saying it definately is lyme, but we have seen this same story time after time, and we all would want you to get the help you need.
The sickest of the sick are least likely to produce a positive result... as your immune system is not fighting it, and the test usually only check for ur immune system response.
KEep us posted, and DO NOT GIVE UP.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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bettyg
Unregistered
posted
Amy, have your md give you a copy of your results and WHICH LAB did them? Bettyg
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Amy,
While looking for lyme, make sure your doctor is looking beyond lyme. If you have had 6 yrs of treatments (I assume abx) you very likely have leaky gut syndrome.
If you have LGS, you most certainly have systemic yeast and parasites. Systemic yeast can be deadly and has the exact same symptoms as lyme. A clinical diagnosis of lyme could completely miss the yeast and more abx treatments would just excerbate the problem.
LGS will also lead to Celiac disease (as can lyme bacteria in the gut). Lyme can cause Rheum. Arthritis. So can systemic yeast.
Find an integrative doctor who will test you for these things and more. If you have any of the above, your internal organs could be failing from the overload of toxins. Especially your heart.
Healing begins in the gut. Heal the gut. Get with an intergrative doctor who understands this. You may well have to work with an LLMD and an integrative dr. The LLMD may be too focused just on lyme and miss the other contributors to your pain.
This was happening to me and I did develop Rheum Arthritis. Do a search of my handle and read everything I have written. You may well be heading down the same path.
If so, take heart!!! There is a cure and you can become pain free!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dear Looking,
If you haven't had the western blot yet, you should be aware that the test you DID have is wrong about 50% of the time. That's a LOT!!! So whaddya mean you don't know if it's worth it?? Of course it is! But PLEASE don't bother getting a western blot from a bad lab. Get one from IGeneX. See website by the same name. Get tests 188 & 189 -- they'll mail you the kit and you can have blood drawn locally and ship it to them in the prepaid FedEx mailer.
You sound pretty despairing and I'm so sorry to hear you are so sick. But Tabers and others here have given you good advice. The problem is your doctors have been looking at your symptoms and NOT at what's causing them! If indeed you have lyme (and we aren't doctors so we can't say for sure), then you must start treating it, and with some time, your symptoms will start going away.
You may also have one or more co-infections along with lyme.
Please get tested by a good lab. Please DO line up an appointment with an LLMD so you can start getting better! There IS hope and lots of support here 24/7!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Ok I got an appointment with a LLMD! THanks for all of you repleys. I am going to see Dr. C in MO. I got in on August 14! So I am hoping after 6 years maybe I can get to the bottom of what been going on! Have any one ever seen Dr. C? Any pointers about going to see a LLMD?
Thanks for all the imput!
Amy
Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Amy,
It's good that you are seeing an LLMD. I hope this moves you closer to some form of diagnosis and steps to real treatment, whether it be Lyme or something else.
My advice for visiting an LLMD is to get copies of as many medical records as possible, particularly and blood tests or other lab work.
Also, prepare a detailed medical history to bring in. Put things back as far as you can remember. Any infection, food poisoning or other illness you remember. Also any symptoms you have now or in the past and when they started and/or changed.
You may also want to keep a detailed symptom diary from now until the appointment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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So I am hoping after 6 years maybe I can get to the bottom of what been going on! Have any one ever seen Dr. C? Any pointers about going to see a LLMD?
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