posted
I've been struggling with a debilitating fatigue now since September 2016. I've been too sick to work at my job and off on disability leave. I've tested high for epstein barr igg antibodies and assumed that was making me sick. This came 2 months after a brutal case of shingles on my forehead.
My pcp sent me to an infectious disease specialist who ordered tons of tests. Cbc and metabolic panel all normal, multiple times. ANA and CRP were negative. Normal sed rate. He doesn't know whether the ebv test means anything. I also had lymphocyte subset panel, immunoglobulin panel, IGE, ANCA, tb, hiv, syphilis, q-fever, brucella, babesia duncanii pcr, Bartonella henslae ifa, Lyme C6 peptide, elisa. All thru quest, labcorp, or arup. All negative or normal. CT scan of torso found "scattered begnign cysts on the liver, a little prostate enlargement, but all else normal. No liver or spleen enlargement. I'd doc said there's no way I could have Bartonella or babesia because my blood counts are normal and no liver spleen swelling.
So I went to a naturopath who persuaded me to get tested for Lyme.
here's the igenex results : Lyme Igm bands 31 and 41 positive, 23-25 indeterminate. Lyme igg band 41 positive. CD57= 74
Babesiosis duncani FISH whole blood is positive Igm 80: negative < 20 Igg <40: negative <40 5 Bartonellosis b henslae Igm 80: negative <40 Igg 40: negative <40
I've got a litany of symptoms but the worst for me are fatigue, exertion malaise, unintentional weight loss, insomnia, anxiety, pyriformis muscle pain. My pcp says it's just chronic fatigue and I'll need to rest and wait it out. Id specialist refused to treat me based on "invalidated" igenex testing. I don't trust my ND as he was looking up treatments on "up to date", he should've had that information down cold and not needed to look it up in a glorified medical encyclopedia. Now, I await an appt with a "real" LLMD. He's an "ilads fellow" so that's a hopeful sign. 2 more weeks to wait for my appt as he's in high demand.
What do you think? Is there any merit at all to the id specialist's contention? Could I be this sick with Lyme & coinfections and have all other systems functioning normally?
Thanks, Mars
Posts: 28 | From Norcal | Registered: Apr 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sadly, the answer is "yes."
My routine and special blood tests were all normal and I was sick as a dog. This went on for 10 years with doctors offering me antidepressants, telling me I was NOT sick, yelling at me that I was normal, etc. until a good endocrinologist thought to test me for lyme disease. I was positive.
And, Igenex is tops. So, good for your ND. This is the lab the lyme specialists use. If they say you have lyme and babesiosis (which they are saying), you have it.
From page 7 of Burrascano Lyme Treatment Guidelines:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands."
You are positive on band 31, slightly positive on 23-25, and positive on 41. So, you have lyme.
You are also positive on the babesiosis FISH test. The only way to be positive on that test is to have babs.
My lyme doc told me that the FISH uses a very high-powered microscope to look at your red blood cells. If the technician sees any babesiosis in the red blood cells, then you are positive on the FISH. That is the only babs test I was positive on, just like you. But the FISH is definitive for babs if it is positive.
Quest and LabCorp are junk labs when it comes to tick-borne diseases. They rarely catch them. Igenex is a tick-borne disease specialty lab. That is why they find these diseases when other labs don't. They have better tests and more skill at it.
So, now you really need to get to a doctor who specializes in treating lyme disease. The best is one who treats only lyme patients all day long.
After having lyme for 1 year, your immune system will be compromised (like with AIDS). That is why many lyme patients are positive on Epstein barr and other viruses. See here where Burrascano says it:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)." (page 3)
This is likely also why you got the shingles--because lyme has compromised your immune system.
I strongly suggest you read and STUDY the Burrascano Lyme Treatment Guidelines. Read about babesiosis and the viruses lyme patients often get.
Be SURE to read page 31 and following where Burrascano tells you how to restore your immune system to normal. You must do one continuous hour of weightlifting (a full body workout) every OTHER day. You use light weights and do many repetitions.
If you do not do this, you likely will keep relapsing and catching any diseases that come along.
I went undiagnosed for at least 10 years. My good lyme specialist told me at my first appointment that I would never get rid of lyme if I didn't do the weightlifting requirement. I believed him and I did it. I credit it (along with good treatment by the doc) for my recovery.
I have been rid of these diseases for 12 years now and live a normal life.
I stick around LymeNet just to help folks like you.
So, welcome to LymeNet! We will help you all we can.
posted
Thanks tf and Lymetoo. These symptoms seem so non specific, I was having my doubts. The id specialist seemed so cocksure that igenex is "experimental" and "non-validated". I needed some reassuring. There are sure a lot of people sharing the same story of misdiagnosed Lyme and coinfections by the mainstream medical establishment.
Posts: 28 | From Norcal | Registered: Apr 2017
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic