Igenex labs came back negative but IND on lyme-specific bands, plus positive for the heat shock protein indicative of lyme.
Sx have been going on for 7+ years and include: bullseye rash on thigh, (the rest of these sx are my DAILY sx) fatigue, insomnia, fibromyalgia, swollen glands, blurry/double vision, floaters, halos, migraines, constant low grade fevers offset by low body temps, facial weakness (very mild palsy), confusion, brain fog, driving to the wrong place (doc told me not to drive anymore), getting lost easily (like, even on one straight road!), plus many other sx that aren't as significant daily.
One llmd (who has been treating ld for a little over a year and has a handful of patients) said my sx definitely are indicative of ld and certainly warranted a challenge.
I herx on the slightest abx, so I'm on 100 Minocycline every other day (am moving to every day next week, then twice a day eventually). I'm also on probiotics, lecithin and taurine and detox tea. I tried magnesium but it made me nauseated.
My current doc believes you shouldn't feel horrible, that you should allow your body to process the toxins and take things slowly. I definitely love this approach, but I wonder if I'm even doing anything to the ld except essentially teasing it.
So my question is: would you get a second opinion if you were me?
Second opinion would be with Dr. C in MO next Tuesday (scheduled a month ago), would involve driving 10 hours each way and staying in a hotel, keeping son out of school for three days for the trip, loads of extra cost, etc.
I know everyone says he's the BEST, but if I'm already getting the right tx, then it's just an unnecessary trip.
Thing is, I'm concerned that I should be treating this more aggressively, even if it means feeling horrible while I do it.
My neuro sx have been getting steadily worse since I was treated for pneumonia in Jan with steroids. When I say worse, I mean significantly worse, and that scares me - being on so little med for it scares me.
Just looking for some opinions from those of you who have experience!
Thanks in advance, Sarah
Posts: 91 | From East TN | Registered: Mar 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
7+ years and include: bullseye rash on thigh, (the rest of these sx are my DAILY sx) fatigue, insomnia, fibromyalgia, swollen glands, blurry/double vision, floaters, halos, migraines, constant low grade fevers offset by low body temps, facial weakness (very mild palsy), confusion, brain fog, driving to the wrong place
Get treated bullseye + symptoms = lyme
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Do what you feel comfortable with. If you think your LLMD is too inexperienced, by all means, go see the other one.
I travel to NY (and I'd argue with you, mine's the best. ), I have to fly there and stay overnight. It's really irrelevant what the sacrifice is to get there. You can't put a price on health.
My doctor is very aggressive with treatment. He likes to treat Lyme in all its forms at the same time, so that means I'm on a lot of antibiotics. However, he's really into holistic medicine and has me on lots of supplements to help my body detox all these toxins.
After three months of treatment, I've gone from 15% to 35%, and the only reason it's 35% and not 50% is because I feel extremely fatigued until noon. After that I do pretty well.
I find great comfort in the fact that he's the president of ILADS and has been treating Lyme for 20 years. I do whatever I have to do to get this experience.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Oh, and I agree, bullseye rash + symptoms = Lyme. I wouldn't worry about your test results, you've got it. Many people with chronic Lyme test negative for it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Geez, I didn't remember that you said you had a bullseye rash!
It is DEFINITELY Lyme then!
Have you asked dr#1 if you will be going on stronger abx later??? Is he just allowing you to get your feet wet....or is that his entire plan??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I would get a second opinion!!! I personally am pro-aggressive treatment because people can go downhill nastily- that is my bias because I did!!
A bulls-eye rash is made by the actual spirochetes in skin- if you have one, you have Lyme.
Best wishes, Sarah from CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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groovy2
Frequent Contributor (1K+ posts)
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posted
Hi Saraha
Bullseye and your symptoms you list point to Lyme --For Sure -- and maybe co infections
Taking a low dose of ABX may not be a good thing- germs get immune to low dose of ABX and then they are Much harder to kill--
Herxing is a Good thing- No Fun tho -
Make sure to drink Lots of tea or water- No lemon when on Mino or doxi-- makes- Photo Toxic -reaction Much worse--
My Igenx tests came back IND -- I had Bullseye weeks before I got sick-
Put Little faith in tests--they are very poor-almost useless -- Many things can sque results--
I would say if you can see a LLMD that is more experanced then thats what you do--
Lyme is a Wacky disease - Way to Wacky for Most doctors to handle--
Throw in co-infections and you have a full blown WackAthon no your hands--
A good LLMD is worth the money-- your odds of getting proper treatment go Way Up --
And the LLMD will most likely be able to set you with Free or low cost meds-- its Very Much worth it just for the meds help --
money comes and goes --
but You only have One life -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I vote yes on the second opinion. Sorry it's such a travel hassle for you, but if there's anyway possible for you to do it, I would.
Posts: 991 | From California | Registered: Feb 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Sometimes people have to go slow and work up to the agressive treatment of antibiotics.
I could not get aggressive with treatment many times because I could not tolerate herxing, so had to work up to the higher dosages.
If you cannot tolerate higher doses of minocycline, then the herxing is too much. Why not wait until you work up to the higher dosage of minocyline and see how you do.
Maybe you cannot do the aggressive treatment now? if you increase the minocycline, are you able to tolerate the herxing?
I know sometimes the herxing was too much it nearly killed me. One time I had to stop antibitoics for 2 weeks, and to this day
I dont know exactly why, I think it was a herx, my liver enzymes were normal.
I then resumed treatment.
We are all different. Is he really teasing the bacteria, or is he working up to the higher aggressive treatment? because YOU cannot get aggressive right now?
My view is this, In lyme treatment, I start off with the dosage, and by the 4-5 day I usually have a herx, if it is too strong, I know, I then have to cut back or call the LLMD to see what he thinks.
At one point, when I was in babesia treatment, I was on the clindamycin and quinine, I was at 1/4 capsule twice a day, and worked up.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I would definitely go, especially if your neuro symptoms are getting worse. You probably need more aggressive treatment.
Posts: 1366 | From Southeast | Registered: Sep 2005
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), I have to fly there and stay overnight. It's really irrelevant what the sacrifice is to get there. You can't put a price on health.
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