Topic: My LLMD visit today: a little frustrated/discouraged
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
He went over my IgeneX results, and I'm just really upset with it all.
My Lyme test is technically negative, although he said it is also a clinical diagnosis.
My IgM results were 34 IND and 41 ++, and my IgG results were 31 IND and 41 +.
He is going to continue with the Doxy and Rifampin.
My babesia test came back negative, and at this point he is not treating me for that.
I'm still having the chest tightness/pain and air hunger/shortness of breath, and along with the visual stuff, those are now my worst symptoms.
I'm having a lot of issues with insomnia or ability to stay asleep, so he prescribed something for that--I think it's called Elavil.
I'm just so discouraged because I was so sure we were going to start treating for babesia, and now we're not.
He was running way behind schedule today, plus I had my kids with me (no babysitter available today--what a pain!), so I wasn't able to ask all the questions I wanted to.
Now I won't see him again for 2 months, so I guess if I still feel this way with the air hunger and stuff, I'll have to really push.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
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Hi Starfall,
Sorry that you are feeling discouraged after your appt.
I bet people here with babesia would be able to help you.
I wonder if he would agree to you trying artemisinin? You'd want to check and see that it didn't interact with your other meds/supps.
We all know that the testing isn't 100% accurate.
As far as your western blot...mine was CDC negative also....that doesn't mean a thing since it's only a reporting criteria, not a diagnostic criteria.
Band 34 is lyme specific...outer surface protein B. My LLMD says that an IND result on a lyme specific band is like a fingerprint....it's still the same fingerprint, just not as dark.
Band 31 can cross react with viruses, but is considered species specific also...outer surface protein A.
My LLMD treats more based on symptoms, although he considers the test results.
I bet others will be along to help you.
Maybe you could even post a separate question (so those with babesia will see it) about your babesia symptoms and get ideas from others since your LLMD isn't treating it.
Hope you start to feel better soon.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Which babesia test/s did you have? Just antibodies, or did you also get the FISH assay?
Posts: 374 | From United States | Registered: Nov 2008
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Starfall1969
Frequent Contributor (1K+ posts)
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posted
He did the FISH test for babs.
That's kind of why I was so sure it would show something.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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All the symptoms you describe can certainly be attributed to lyme. If your LLMD is ILADS-educated and has treated a lot of other TBD patients, I'd give is some more time.
It's also important to realize that treatment will not necessarily make us feel better for quite a while.
Are you taking all the supplements that are suggested?
And - as for they lungs, Cordyceps should help there. If you need more, try adding Stinging Nettle and Quercetin.
Avoiding gluten, dairy and corn will help the lungs, too.
Magnesium should help reduce the stabbing pains. Are you taking close to 1,000 mg a day? And Fish oil, too? Those will help with pain reduction and to also lessen anxiety.
quote:Originally posted by Amanda: [QB] tests for Babesea are even less reliable than tests for Lyme.
absolutely!!
You could definitely still have it. Maybe he'll consider treating you with a trial run of babesia meds to see if you react to them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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losferwrds
Unregistered
posted
The elavil may keep you calm and help with air hunger, usually the air hunger leads to anxiety which makes it worse, do you have any history with Anti Depressants, they can have some parodoxial effects like increased anxiety and insomnia
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Keebler
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What is your adrenal support? I forgot to ask that. Cordyceps can help with both lungs and adrenal support (which will help the anxiety) but you may need more for the adrenals.
Elavil nearly did me in though, and all its cousins, on various tries over years, long ago. Any of that made everything MUCH worse, especially the anxiety. I was suicidal on any of that stuff.
Starfall1969
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Member # 17353
posted
I'm afraid to try the Elavil because I have had bad results with every antidepressant/antianxiety I've ever tried.
I was on Zoloft, Lexapro and Xanax (not all at once) at one point, and taking them actually sent me into a panic attack.
I told my LLMD this, and he wants me to try it anyway.
I think he said it's a 10 mg dose, and I can split it and only take half to start.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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The tricyclics, like Elavil, work differently than the SSRIs. They slow your system down, which is why they are used for sleep. For me, they simply caused dry mouth, which was too unpleasant for me to take.
I wouldn't be afraid to try Elavil because it works differently than the others to which you had a bad reaction. Of course, do what you feel comfortable doing!
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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kelmo
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Member # 8797
posted
Wellbutrin saved my daughter and I from certain suicide.
She needs Geodon at night to go to sleep. I only take 150mg (half dose) of Wellbutrin in the am, so I don't need something heavy at night.
Babesia can still be there. My daughter treated for it anyway, it made a difference.
Posts: 2903 | From AZ | Registered: Feb 2006
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randibear
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Member # 11290
posted
elavil has been a godsend for me. i tried lunesta, ambien and had scary hallucintions. even mike was scared one night, i was totally out of it.
10 mg is what i take. just takes a couple of hours, no realside effects except dry mouth.
i keep water by the bed and it;s been no problem.
i wouldn';t worry about taking it. it's such a small dose.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Hoosiers51
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I agree that it might be a good idea to try some anti-babesia herbs and see how you react. Just do so with caution....start with half a capsule or less if you have to (i used to dump some out of a capsule).
I have had bigger herxes on artemisinin (nutricology brand is good) as opposed to Zhang's. Not saying Zhang's isn't good, but just that I had more of a noticeable herx on Artemisinin.
Like I said though, use with caution, please!!!! I don't want it to knock your socks off.
About the Elavil, I have had bad reactions to some antidepressants, but with Elavil, it was okay....didn't make me crazy or manic or anything. I stopped because it made me too constipated (so maybe take some Fish oil to counter that? because I think Elavil will dry out the colon)
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Ohh I just noticed you are on Rifampin. Hmmmm....that could interact with the artemisinin.
I would wait until you are off Rifampin to take the artemisinin. The Rifampin could make the art way too strong and that would really not be a good thing for you or your body, or it could make the art leave your body too fast and you won't even notice anything. One or the other...not sure which one.
So honestly I would hold off trying anything similar to artemisinin until you're off Rifampin.
Hope you can try some new things and get some answers soon! The herbals might eventually be a good route to go.....I think with babs they do hold some promise.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
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Member # 7521
posted
I have never tested positive for Babesia, FISH and every other imaginable test.
There is no doubt I have it, and have been treating it for two years.
I used to have DRENCHING night sweats, to the point where I would have to change my PJS up to three times a night AND the sheets daily. I remember I could literally wring out my pjs, or when I dropped them on the floor they landed with a loud thunk they were so heavy. It was literally as if someone soaked them in a sinkful of water.
I also had all the other symptoms, which were my primary symptoms. My LLD treated me and continues to treat me clinically, and the symptoms have improved.
I rarely have night sweats anymore, and when I do they are fairly minimal. I still run a fever most evenings but recently it has started to abate a couple nights a week; first time in YEARS I haven't had a fever every single night.
I take Mepron, 2 tsp a day, Zithromax, 500 mg a day and Artemesia, 2 per day for Babesia. Currently I've been on this protocol for four months.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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quote:Originally posted by Starfall1969: [QB] I'm afraid to try the Elavil because I have had bad results with every antidepressant/antianxiety I've ever tried.
I was on Zoloft, Lexapro and Xanax (not all at once) at one point, and taking them actually sent me into a panic attack.
Elavil is in a totally different class than any of the above. I would encourage you to try it!! 10 is a VERY low dosage. VERY.
good luck!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tickbattler
Unregistered
posted
There is more than one strain of babesia, and the FISH test only tests for microti as far as I know. Also, it is not reliable as others have pointed out.
I agree that a trial of artemisinin might be a good idea.
We started treating one of my boys for babs based on night sweats, occasional pain in the back of the head/neck, (and one time he said his jaw hurt). His night sweats increased on the Mepron and also when we added artemisinin too. His tests were negative for babs at that time.
But 4 months into babesia treatment, he got a positive titer for babesia duncani, after several previous negative tests. This was through the Igenex WA-1 test.
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Thanks for all the advice.
Yes, I am on Rifampin. Maybe that's why he didn't start me on anythign for babs right now, because the Doxy and Rifampin seem to be doing some good for the Lyme and Ehrlichia symptoms.
Also, isn't zith used to treat babs? I am allergic to it, so maybe he's trying to figure out what to do about it.
I figure I'm just going to keep very detailed symptom lists and give them to him at my next appointment.
We'll see where he wants to go from there.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Lymeorsomething
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Member # 16359
posted
Star, maybe push for a Fry blood smear as well....worth a shot...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I just wanted to say that my MD gave me Elavil for the nerve pain. He prescribe me 10 mg. I was SOO nevous to take it cause I'm EXTREMELY sensitive to any antidepressants. They literally make me feel like I'm tripping on acid or something. It is horrible.
Anyways I cut the 10 mg into 4ths and it still messed me up! THANK GOD I didn't take the whole thing! I would've ended up in the hospital. Needless to say I didn't take it ever again.
But, I know people that have done good with it... So I guess it just effects people differently.
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