posted
Hello. I'm about 10 months into this saga trying to figure out what happened to my health. On the whole, I don’t think things are terrible, just not “right” for whatever that’s worth. For background, I’m a late 30s male, no prior history of anything.
This started in early January, when I had a pretty sharp pain in my stomach right under my left rib cage. It went away pretty quickly, but has kind of been an off and on dull ache since. We had just come back from a trip to Mexico and Belize, so I thought I had picked up something there.
It lingered for three weeks, so I went to a GI, who offered the standard mix of probiotics, PPIs and fiber. None of that solved it. I think the fiber made it worse, actually. We also did standard bloodwork (CBC, CMP) and an abdominal ultrasound, which were all normal.
A subsequent visit to the GI came with parasite testing, H. Pylori testing, and celiac testing. All were negative.
I then had a colonoscopy and endoscopy, revealing gastritis and ileitis. I was not having lower right quadrant pain up to that point, so the ileitis was surprising. The ileitis was suspected to be Crohn’s, but the biopsy did not show that. The pathologist had no explanation, other than the inflammation could be viral, bacterial, or parasitic, effect of the colonoscopy prep, or maybe something else.
Anyway, that GI gave me an IBS diagnosis and sent me away. I went to another GI, who determined I had SIBO after a breath test. I had two weeks of rifaxamin, which did little other than create more lower right quadrant discomfort. Reviewing the test results, it is methane-based SIBO, although the doctor didn’t seem to think it mattered whether it was hydrogen or methane dominant.
Other GI things going on: the stomach episode seemed to create lactose intolerance, and maybe some other dietary intolerances that I haven’t been able to figure out (although I now think it could be histamine). I also had less-formed stools, maybe once outright D.
I’ve made some dietary changes to compensate for my discomfort, but nothing really resolved it well enough to make it something I could just accept and live with. Wanting to revisit the parasite testing, I went to an infectious disease doctor a few weeks ago, who re-ran the parasite tests (all negative) and did a CBC, which showed I was a little under the reference range for WBC and had low absolute monocytes. She said it was not pathologically significant.
So, I Googled around to try to figure out what a combination of low WBC and low monocytes would mean. I stumbled across B12 deficiency amongst other things, but I found someone’s Lyme story and thought about that a bit. I then remembered a tick I pulled off my right arm last fall. No rash and no recollection of being sick, so I didn’t think much of it at the time.
That said, my right elbow has been bothering me for no apparent reason most of this year (doctors have called it tennis elbow from sitting at my desk and leaning on it). My back and neck have been stiff and sore at times, which I always just blamed on my mattress and pillow. I’ve been sleeping 8-9 hours/night, but always feel kind of tired. I have little kids, so I always just assumed it was being a parent.
Despite the perceived fatigue, I still exercise (running) at the same levels as before this all started so how “tired” can I truly be?
There have been other little things here and there- clumsiness, soreness, aching, itchiness, etc., nothing major and nothing I’ve given much thought about but definitely “new to me.”
Anyway, I went back to the ID doctor and she wanted to do another CBC to see if the WBC was an anomaly before sending me off to the hematologist. I also had her check my B12 and mentioned the tick bite. She said a GI presentation of Lyme was “uncommon” but ordered the ELISA and WB. The ELISA came back at 0.99 (equivocal), and the WB showed that only band 41 on the IgG was reactive.
This was all done through Quest, and my impression is that most people on the Internet don’t like their Lyme tests. That said, they still showed “something” whereas it seems most show nothing.
The WBC and monocytes were right in the middle of the normal reference range, so they seemed to jump quite a bit in two weeks. B12 was 420, which seems a little low to me but is technically normal.
I’m expecting to talk to the doctor today about the results. I only mentioned the sore elbow in passing when I first met with her; the non-GI symptoms didn’t seem relevant given that I was there for a possible GI infection. Has anyone out there had similar GI symptoms with Lyme (pain under ribs, food intolerances, lower right quadrant pain/inflammation)?
Given what I’ve read on these boards and others, my expectation is that the ID doctor will dismiss the possibility of Lyme. There are a few LLMDs around here, as well as another ID in the practice who says he specializes in Lyme and might have a different opinion.
For financial purposes, I’d rather find a covered doctor but I feel like I’ve wasted so many months and so much money on this already that it might be worth just biting the bullet and visiting the LLMD next if the ID won't treat it (if it is Lyme in the first place).
Thanks for your thoughts and for reading this. I appreciate any insights.
Posts: 3 | From Rockville, MD | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, when I was searching for my diagnosis, I spent a lot of time at the gastro. All my tests were normal, but I had horrendous episodes of lower abdominal pain.
I finally found out I had lyme disease. Then, I tested positive through Igenex for babesiosis and bartonella. Here is a quote from Burrascano that mentions how bartonella can affect the intestinal tract:
"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore." (page 24)
I really didn't have ANY of the other bartonella symptoms. So, you may not either. Once, I had burning soles of the feet in the afternoon for a number of hours. That's it.
But, once I got to a good lyme doctor and got treated for bartonella, that was the end of my suffering with abdominal pain.
As you will see, Burrascano recommends treatment with Levaquin for bart. That is what my doctor used. I took it for 30 days with no problem. (There are many folks who will warn you about the dangers of this medication. You may want to look into it.)
This is all to tell you that treating lyme disease will not get rid of bart if that is what you have. Each lyme so-called co-infection requires different medications. Read it in Burrascano.
Also, folks with lyme quite often have many food intolerances. You can do a search on LymeNet (see Search above) and type in food intolerances and see how many have talked about this.
On p. 10 you will see Burrascano list "Chest wall pain or ribs sore" as a lyme symptom. Back and neck pain are common lyme symptoms.
Pain in joints such as the elbow is common also.
Until you get to a lyme specialist, you will NOT be dealing with anybody that knows anything about lyme. What they think they know about lyme is all WRONG!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I had a house on a barrier island full of deer...I started feeling sick the first year out there, probably 1980-81...once Lyme hit the news I made my MD do annual tests - they were always negative ...but they were always done by Quest...then 10 years ago I couldn't walk...guess what SUNY Stony Brook and Igenex both came back positive...
I have no confidence in Quest Labs for Lyme...
Posts: 277 | From NY | Registered: Jun 2005
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posted
Thanks for the feedback. I'm still waiting on a call from the doctor. I left another message this morning and am a bit frustrated by the silence.
I see so many people noting that a negative ELISA means nothing and a positive is a near certain infection given how limited the test is. Mine was "equivocal" and right in the middle of the measurement scale. Should I read anything into that? Maybe it picked up a cross-reaction to something else?
Posts: 3 | From Rockville, MD | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The LabCorp and Quest lyme tests ARE junk.
Based on your history of a tick bite, and the ensuing symptoms, and the equivocal junk ELISA result, you really owe it to yourself to get to the lyme doctor I recommend to get to the bottom of this.
I don't think you will get anywhere until you do. The lyme doc will give you a much better and more complete blood test, including coinfections. I think that once you get these results you will find out that you have lyme, babesiosis, and bartonella like every other lyme patient in Maryland.
The doctor is also an outstanding internist. He will not jump to a lyme conclusion. It will be well worth the money and you will not be sorry you did it.
You will have nothing but frustration until you get to a doctor who is extremely knowledgeable about this complex disease.
Also, there is a time factor here. With lyme, the sooner you start to treat it the better the chance for a cure and the shorter the treatment. There is a noticeable downhill for the immune system after about 1 year of illness. (Like AIDS, lyme compromises the immune system.) That makes the battle rougher. So, don't delay. This illness can be horrendous.
Not to scare you, but lyme can cause a person to lose their job, their brain, and then everything else follows--health insurance, credit cards, house, etc. It is nothing to take lightly or to try to skimp on money about. So, take the plunge. Here is a quote from Burrascano for you:
"In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate.. . . Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)....Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system" (page 3)
Posts: 9931 | From Maryland | Registered: Dec 2007
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