I have been treating for a year now and have been symptomatic for 18 months. I have been on multiple orals and two different IV meds. I have not improved at all. And�as much as I hate to say this, I have really regressed on my latest course of IV doxy. I have been on it for six weeks and have a script for the next three, until I see my LLMD next. I am also on zith M-F, flagyl on the weekends and rifampin daily. Is the doxy just a bad drug for me�should I stop it�or stay the course until I see my LLMD the end of April? I am really struggling�nothing is working and it seems like the doxy is actually hurting and making me worse. It is not really a herx, I don�t think, just basic disease progression, as I have never herxed on anything, I don�t think. My brain is the major problem...'never really had much joint pain and/or fatigue.
How long should you give a med to work before stopping/switching?
What is an "average" treatment time...or better yet, what is the "average" time to see improvement in symptoms?
Any thoughts?
As always, many thanks!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
the theory is that we should progressively feel better. Re: feel worse (herx) and gradually the herx becomes less severe and symptoms improve.
some of us, for whatever reason, just feel worse and worse and never seem to get back to pre-treatment baseline.
theory also says that when we do not improve, we are probably co-infected. It looks like you are hitting lyme hard, cysts and bart with your current protocol..have you done any mepron or malarone ? artimisinin? Tested for viruses?
I'm still as sick as I was when I started treating, so I am not a good gauge for success...not to be a downer, but it is also said that approximately 20% of us are non-responders.
I don't believe that though. We have to find our missing piece of the puzzle, IMO. Hang in there...
responded to move you up Tri- hope that some better advice comes your way.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
My brain function got WAAAAYYYY worse when I was on Doxy. I really couldn't do anything, I was so far out there.
I stayed with it though. I don't know what ended up helping me, because when my brain sx really began to clear, I had started getting into detoxing more as well as adding Ceftin to the list.
Not near where I'd like to be with this issue(yet), but I can read and communicate again! At the time I thought I never would!
I would think it is worth sticking to it and detox, Detox, DETOX! Posts: 60 | From MO | Registered: Jul 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit is alive!!! Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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How long should you give a med to work before stopping/switching?
What is an "average" treatment time...or better yet, what is the "average" time to see improvement in symptoms?
Any thoughts on those questions though?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I wish I knew the answer to that question as well. Have you been checked for co-infections? Heavy metals? Diet allergies? How do you know you are not herxing? I keep a log of all my symptoms and rank them from 0-10. Then, I total them up each day. I can see a pattern. Every four weeks it gets a lot worse and also after my Flagyl my symptoms worsen for a few days. Maybe try doing this so you can give it to your doctor. Just a thought!!!
Who do you see? I am from PA and I'm looking for a new doctor.
Posts: 144 | From Pennsylvania | Registered: Jan 2011
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I have been tested for co-infections...tested indeterminate with a local lab for babesia and negative for it through Igenex. 'Didn't get tested for bartonella, though, although I have treated/am treating for it with bactrim/cipro in the past and rifampin currently.
Yes, I keep a symptom log, too, but never see any pattern...just bad, bad, bad.
I will PM you the doc info...
Thanks.
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I treated 4 long years with IVS, IM shots, heavy orals, herbal, holistic, ozone, you name it I was only getting worse, I have all coinfections and was put on the right treatment protocol for them
I am now rifing and have seen more progress in 6 months then I had with 4 years of anitibiotics
I see a holistic doc and also use strong detox herbals, etc I have been antibiotic free since NOV 2011
Rifing is not easy though, the herxes can be brutal and you have to work with someone who knows what they are doing
I just wanted to add this because I know how you feel. Some people do not respond to antibiotics
Posts: 298 | From usa | Registered: Aug 2009
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posted
My two cents...I was kinda in the same boat as you. I didn't feel like I was herxing but just sick all the time, and for a long time 8 months for me (not that long in Lyme land) no good days, none.
I was herxing the whole time, I found out I didn't detox well. Had the HLA DR test and the MTHRFR test done and that said it all.
When I found that out I started doing a lot of activated charcoal like 3 grams at a time, and I started to get better. I have just started CSM ( Cholestrymine ) about a month ago and I wish I had done it sooner.
If you do try CSM start it slow, 1/2 tbsp a day for 7 days, then up the dosage 1/2 tbsp. I also used high dose fish oil with it to minimize the inflammation response. I know it doesn't make sense that you would herx from detox but you will.
I found the "high dose" fish oil dosage on line. I don't know if it is the same as what Shoemaker suggests, but I am doing 3000 mgs 3x a day and I didn't herx from the CSM. Plus you need to start the fish oil like 4 days before the CSM.
Another thing you shouldn't rule out is mold, it was a big part of my illness. I don't detox that well either, and I had it in my house. Just finished a pretty big renovation.
Hang in there, don't give up on your health, keep searching for the answer and you will find it.
Posts: 845 | From Northeast | Registered: May 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I have been at this for about 8 years off and on and off and on. Better then worse, better then worse...
The one thing I have found is that detox is HUGE for me. I cannot get rid of the toxins so the more I kill the sicker I get.
I have decreased my meds temporarily and am focusing on detox through; IR Sauna, Lymphatic Drainage Massage, detox supp.'s , yeast, got the black mold out of my house, got rid of chemicals (severe MCS), eat only organic, exercise when I can (triathlete as well), alkalining the body and minimizing allergens.
I find that after a few weeks of upping my detox I start feeling better and get back on full time meds.
But for me there is a definitive pattern of getting better - but that would never happen without serious detoxing.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I'm surprised that you are getting IV Doxy.
If you read the latest ILADs studies, these docs are all using IV Ceftraxione (which is a kick-a** form of penicillan).
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
"Indeterminate" on babesia test and still sick ?? You are BOUND to have babesia.
You will not get well until it is treated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
If you have Babese, you can not get rid of the lyme. The LLMDs are reporting more and more Babese that is resistant to mepron and malarone. What do your red blood cells look like? If they are abnormal at all, Babs could be what is holding you back. For myself, malarone and plaqunil did not help, the quinine drugs and artemisin work better.
If red blood cells look normal consider having the Shoemaker HLA gene panel done. I know in our support group, every person that has not gotten well has some gene for either mold or lyme or both. I just had this done not long ago. After 5 years of treating, turns out I can't get rid of lyme antigenic material.
Do you have regular blood work done to look at your white blood cell counts? This can tell you a lot actually, and after a while you will see patterns. I can tell in 2 weeks if a drug is not working for me by looking at this simple blood tests.
What bout virus testing? Viruses wil lower your immune system, and keep you from gettng well.
As you say, IV doxy just may not work for your lyme. But your llmd might suspect another infections (Ehrlichia) which can destroy your immune system. So its good you have at least tried that drug
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
oh, and I have know people who were really sick on abx for 2-9 years, and then got better all at once. Not everyone is the same.
I heard Dr. h say that this is a marathon, not a sprint.
So, while I think you are right to look around for other reasons you are not getting well, it could just be you haven't done this long enough.
Everybody is different.
The trick is to spend some time determining your patterns.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Hey Amanda how do you get rid of Lyme if you can't get rid of the Lyme antigenic material?
Is there a way to get ride of Lyme and cos still with this?
Posts: 1632 | From Canada | Registered: Feb 2012
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posted
It took me a solid 9 months of abx before I felt I was actually improving and not just herxing terribly all (or most) of the time.
I started treatment in Fall '08 and am still working on it, but I'm much improved.
There were some abx that I could not tolerate at first. My LLMD would usually tell me to stop if I had continuous worsening of symptoms for 3 weeks.
Later in treatment, I tried some of the same abx that I could not handle before and was able to tolerate them just fine, so I do take that as improvement.
I still go into flares and herxes. Some meds, like tindimax, still seem to be more than I can handle, even if pulsed at low dose.
For me, fatigue and its close friends soreness, aching, and brain fog, are the worst lingering symptoms.
Hope you start to feel improvement soon.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
Maya, the way to get rid of antigenic material it to use binders like activated charcoal and CSM. See my post from above.
Posts: 845 | From Northeast | Registered: May 2011
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Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
Hey rx thanks for clarifying that for me . I guess I am on the right track then as my llmd has me on charcoal , physsilium, chlorella and drinking lemon juice
Posts: 1632 | From Canada | Registered: Feb 2012
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
really, the best binding agent is Cholestyramine (CSM as RC1 said)
I want to emphasize that getting rid of lyme toxins may not be a major problem for you. To a certain extent, everyone needs to get rid of the toxins, but for some of us, our bodies accumulate them much more. If you are getting sicker and sicker with treatment, that MIGHT be a problem.
The only way to know that is to have the Shoemaker panel done for your HLA genes
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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