posted
After 1 month doxy, 1 month amoxi, 7wks IV rocephin and now over 2 months Ceftin and Plaquenil....
Why do I feel so terrible still. No improvement at all. It worries me that we are not treating the right thing or with the right medicine. I feel very lost and very sick.
Worst symptoms are GI- diarrhea, nausea, weight loss, abdominal pain; headaches, dizziness, fatigue, general malaise, leg pain, neck pain, etc.
Is it "normal" that I have no improvement in almost 6 mos. treatment? I think I need more aggressive treatment and maybe coinfection too?
Needing some support from fellow lymies.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
It takes a long time to start feeling better.
You might read about parasites, many of us with GI symptoms end up having them. There are a lot of threads here if you do a search. My first breakthrough was when I treated parasites.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
renny, I believe a good lyme doc will treat lyme for a few months (like 2 months) and then add in treatment for a coinfection. Usually, the coinfection that is bothering the patient the most is treated next.
I would not be happy with 6 months of treatment that is still just covering lyme disease and nothing else.
Usually the abdominal and gastrointestinal stuff is bartonella. Did you test positive for bart or did the doc say he believes you have it?
If so, then I would ask to add some bart treatment into your mix.
Also, without knowing your dosages, we can't say if the dosages are high enough or not. But, being put on IV was agressive treatment.
You may benefit from asking the doctor what diseases the medications are treating. For example, when he put you on doxy, was that to treat ehrlichia? Usually, 30 days of doxy is the treatment for ehrlichia.
You can ask what the current meds are treating. You can ask how long the doc intends to treat lyme before going after a coinfection. You can ask if he will treat lyme PLUS a coinfection at the same time. etc.
Just knowing the doctor's thinking is often helpful to the patient.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the tips. I don't remember the doses, except for 2g rocephin daily and now 500mg Ceftin 2X day. I know my doxy dose was quite low.
The doc tested me for coinfections which were negative and therefore he did not feel he needed to treat them. I have read about Bart causing mesenteritis which has been seen on my CT scans.
I moved from NY to FL to do a phD program (eek) and now need to start w/an LLMD down here...e.g. Dr. C. It is slim pickings.
Lymetoo- I cant do that diet because of my GI symptoms. I have inflammation and am therefore on a crohns/colitis diet which includes pretty much no raw veggies, no skin, no seeds, no nuts, nothing hard to digest.
This leaves me with some protein and carbs. I am 112 lbs right now and 5'7". I need to gain weight and I am trying but it isn't working. The GI doc I see wants me to drink BOOST or Muscle milk which are high in SUGAR, Calories and protein.
I am sick to my stomach all the time and sometimes can barely get my meals down. I try never to skip meals but have lost 26 lbs since my illness started (lonnnngggg tttimmmeee agoooo).
posted
Also I take VSL #3, 3 pills a day (two in late morning 2.5 hrs after abx) and 1 at night before bedtime. I also take florastor 2X day, 2.5 hrs away from abx.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
PS (sorry for multiple posts). From what I hear the doc down here in FL treats with Invanz IV and tindimax and alinia. Thoughts?
Today was a tough day. I hope tomorrow is better. It seems I never know...
Posts: 341 | From NY/FL | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
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posted
It seems to me your coinfection tests were done through Quest. Correct?
Quest and LabCorp are useless when it comes to coinfection testing.
You need tested through Igenex to find out all of the tickborne diseases that you have.
I suffered horrendous abdominal pain when I was sick with lyme, babesiosis and bartonella. No doctor, test, or ER could ever find anything wrong.
Good treatment for lyme and coinfections got rid of this symptom and all of my other symptoms. It has been over 5 years now since I completed my treatment and I am still symptom free, enjoying my life.
(I had undiagnosed lyme disease for 10 years.)
The doc is the key to getting rid of this disease.
And, Dr. C. is the doc in Florida.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Alinia did away with my GI symptoms. I took 500mg alinia for 10 days at 2x/day.
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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Oh wow thanks guys. I have been so sick with the GI sx it is hard to believe they will ever go away. I do really need the Igenex tests... I did have the quest ones...negative for coinfections, CDC positive IGM WB, negative IGG.
Have you heard of Dr. C in Fl? Any thoughts on him or his treatment protocol. Can I ask you how did they treat your lyme, bart and bab that made you symptom free?
I hope I can get there. Key word is hope. Thank you to the people on this board who put it back in me when I start to lose it.
Posts: 341 | From NY/FL | Registered: Apr 2010
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But I sure couldn't handle any DOXY at all! had to switch to MINO
Sorry to hear about your problems, hope this helps.
Posts: 606 | From somewhere out there | Registered: Sep 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In Florida, the doctor to see is Dr. C. He is even mentioned in the Burrascano guidelines by name for his treatment (p. 16). He will treat you for coninfections.
The way I got well was by switching to a doctor who followed the Burrascano lyme treatment guidelines.
He tested me through Igenex at first appt, treated my lyme, then my bart, then my babs. Was all done in 1 year.
He also required me to follow the anti-yeast diet, take certain supplements, and do the Burrascano 1 hour weight-lifting program every other day.
All of these elements are necessary to get well. It is not just antibiotics.
posted
Okay thanks so much. I hope I can follow your lead and get better soon! Thanks for your comments and your hope. Please keep sharing your success story with people like me... it is hard to see that possibility when you are super sick.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
I moved to South FL after getting lyme in NJ. I've been going up to NJ for treatment but am feeling so bad now with a relapse that I did some research to find a good lyme doc in FL. It seems that Dr. C is the one to go to. I called for an appmt and they sent me a packet with forms to fill out and office policy. They require you to get a referal from your pcp where you live in FL (unless you live in Tampa) who agrees to work with them (but they didn't explain in what capacity). They also seem very pricey, charging over $500 for first visit and charging you for every this and that. That kind of turned me off. For now, I think I'll go back to my NJ doc to see if she can get me out of my relapse. However, I do understand he treats very aggressively, which may be what i need, and what you need, now. Good luck with your move to Florida. welcome to the sunshine state!
Posts: 43 | From Florida | Registered: Jun 2010
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posted
Yes I finally got that packet filled out. My PCP is in NY and they accepted that as OK. I just moved to Tampa in July so I dont have an entourage of docs here yet.
It took Dr C a week to review my papers. I called today (since I didnt trust they would call me) and got an appointment for the first week in October.
He is expensive, but that is common with LLMDs . Also, I am hoping to submit to my insurance afterwards and get some back. Good luck and I hope you get out of your relapse asap.
Posts: 341 | From NY/FL | Registered: Apr 2010
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because of my GI symptoms. I have inflammation and am therefore on a crohns/colitis diet which includes pretty much no raw veggies, no skin, no seeds, no nuts, nothing hard to digest.
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