Topic: Medications are killing me, need some advice
lymetwister
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The Dr. treating me never had Lyme, so although he is compassionate, when I call him and cry to him, he can only empathize.
His advice was to take a day off, which I did, actually 1.5 days off. Started to feel a little better last night so I took everything again and today has been hell again.
Meds: Mepon 750mg 2 x day Tindamax 250mg 2 x day Zithromax 250mg 2 x day Doxy 200mg 2 x day LDN 4.5 before bed Tons of B vits and other supps.
Symptoms: Severe head pain, shaking in my head while sleeping, short of breath, anxiety, slight body aches, can cry on demand, everything is exaggerated 100 times what it should be. The crying stuff is really getting to me. I have tried all of the psych meds and can't tolerate even pediatric dosages and I don't even know what I'm crying about to be honest.
My thoughts are that I'm full of toxins and maybe 3-4 days is more like it to clear out before restarting, but who knows, maybe I'm just getting worse.
I tried an Epson salt bath and even a coffee enema but no relief.
My father says I should go to counseling, but I feel too sick to even sit and talk to anyone and I would probably just sit and cry the entire session anyway. I was in counseling earlier on before this stuff got so bad and they all told me that if the cause was Organic, than they weren't sure they could even help me. I have people to talk to, but no one understands this crap.
I know I'm not crazy, but 2 weeks into meds and now I have to back off. How will I ever get well.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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map1131
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Gary, I just can't believe in my years of experience, so it's just my humble opinion....
How could anyone feel anything but horrible taking 4 different powerful abx at one time?
I don't believe that this type treatment gets someone well. I'm not a doctor, just a person who lived through combos of abx, that yes was killing me. I could never get to recommended dosages because my brain and body would scream bloody murder at me.
You have to listen to your body. Maybe it can't handle this load of toxins. Yes, abx are toxins and they create more toxins. If your body is not able to detox properly there is no way you can get better on this protocol.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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glm1111
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Maybe cutting the doses in half and increasing slowly would not be so hard on you.
I had these kind of herxes (sobing crying for long periods of time) including, body aches, vibrating, etc. when I first started antiparasitic herbs (about 20 caps a day) and high doses of salt/c.
These kinds of herxes are not just from the antibiotics. I didn't let the crying bother me and just went with it because I knew it was from the dieoff.
Just thought I would give you another perspective from a different protocol.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I know we have talked before. In hubby's experience it was better to go slow. I would try just treating lyme for a couple of months or just babesia for 4 - 6 months.
Or in your case, lyme and ehrlichia first probably -- many LLMD's wait until the lyme load is lowered before tackling babs. And unfortunately babs needs continuous treatment whereas lyme it does not effect the outcome so much if you skip a few doses of meds.
And if you also have bart which I personally think is a high probability based on your symptoms then that also needs continuous treatment.
Have you ever tried cholestyramine? -- brand names are Questran and Welchol I think. For some this works really well to bind toxins. Unfortunately for hubby it is the only thing he has ever taken which caused elevated liver enzymes so he can't take this.
You have mentioned financial difficulties in obtaining Mepron -- why not treat lyme and ehrlichia first and line up the resources or get approval for low-cost Mepron from the drug company so you won't have a problem with the supply of the med when you can physically handle the herx from this treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I'm sorry your going through this......I am on similar to you mepron zith artemesinin omnicef........this may not be the reason but when I was at the drs office she said doxy couldnt be taken with either mep or zith (not sure which, or why)......she double checked it whilst i was there.......its most prob a herx but could it be those 2 drugs working together.......there far more knowledgable people on here than me it just struck me because she took me off doxy when starting the others.......good luck.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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lymetwister
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Thanks so far to everyone,
Bea: Dr. says I have Babs and Ehrlichia. He didn't think Bart. I tested pos. for the WA1 Babs, so thats a given and that was through Labcorp.
I was able to get the Mepron, so that issue is solved as well. I have questran here and did try it before, but I believe it made me Herx, but I'm not sure. I also have charcoal tabs and even Bentonite clay, but so far havn't taken any with the abx.
I am definately backing off as in NOTHING for the next few days to see what happens. This is rediculous what I'm going through over here. One more dose could land me in a psych ward right now, and I'm not looking for that.
I'll update tomorrow, but one last thing. I have been so fatigued the last few days, I feel like I could go to bed at 5pm and sleep through the night even though I havn't only becuase of my kids. I have never been like that so perhaps my body is asking for more rest due to the toxins.
One thing I hate about this disease is not knowing what is what. So many question marks and that makes treating hit and miss.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I have been one of those who could never get up to therapeutic doses on two to three antibiotics and still felt like hell.
I've taken a day break, week break two week break and a month break at times. I believe it takes me two weeks to get all the abx out of my system.
At my last llmd appt we figured after 10 months of treatment I should be further along but I can't take the minimal doses without getting very, very ill and detox methods weren't working all that great--infrared sauna and welchol did help though.
So now we are testing for KPU or HPU or prophyuria--I can't put my hands on the link right now but it's a condition that does not allow your body to detox properly. Until that is corrected, you might not make any progress. Just a suggestion that you might want to look into.
Posts: 123 | From Montana | Registered: May 2009
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posted
Gary, detox is critical. Consider some of the good ideas you got here for cleaning out your GI. Also consider how clogged your liver and gall bladder may be right now (biliary sludge, biofilm gunk, stones, etc.). Many here (like myself) have done liver cleanses with good results.
If you've not considered getting tested for candida, pls do. If I were rich, I would send everyone on Lymenet this book (though it's only 10 or 11 bucks):
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Hey Gary, That's a lot of abx! A LOT!!! The problem with taking so many all at once is that you can't tell which you might be sensitive/allergic to. On my first protocol, I ended up in the ER because 3 of the 5 meds I was given I have a sensitivity to.
Based on my own experiences, I think you need to try one at a time. The meds that make you anxious are probably the ones you have the sensitivity to. I feel it within 10-30 minutes of taking a pill/food/herb.
Like many on here, I became newly sensitive to all kinds of foods and drugs in the past year or two. I've been going to NAET acupressure which is a technique that tests and treats these sensitivities. If you're interested you can find out more here: http://www.naet.com/subscribers/what.html
I hope you can impress upon your LLMD that you need to go more slowly. Or get a new LLMD. Can't you go to Dr. S in Maryland? Also, don't bother about what your dad says--I hope it wasn't mean spirited. It may help to talk with someone because this whole thing is a nightmare but I don't believe it'll solve the problems you describe. You can't talk away bacteria, toxins, and abx side effects. My goodness!
You may have to stop everything, rest, and reformulate your approach. I have learned that we can push ourselves too far thinking it's what we should feel, that it's a herx and that this is good. I think this kind of thing sets us back. At least it did me--evidence was in the bloodwork.
Sorry you're going through this. Feel better.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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kidsgotlyme
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Sorry you are having such a hard time. You have gotten a lot of good advice. I hope it helps!
Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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massman
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Good advice above - good book reference - Murray is a chiro like me.
The sensitivities may be critical. Some people respond well to NAET, I studied it + practiced that extensively. Check it out.
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Massman, didn't know you are a chiro -- cool. The front cover of Murray's book say's he is a ND. Maybe he's from North Dakota?!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Those are NOT high doses. Where is Wild Condor? She'd read you guys the riot act for calling these high doses!
You are only 2 weeks into treatment? Then what you are experiencing is a herx (die-off response) which is pretty much unavoidable. I don't know how anyone ever got the idea that treating chronic Lyme would be easy...It's absolutely BRUTAL, but those who buck up and push through the horror are the ones who will get better!
Toxicity can be a big factor in the herx, so detoxing should ease your die-off symptoms to some extent. I've found toxins to be major culprits in my neuropsychiatric herxes, so hopefully your worst symptoms will eventually calm down over time with the proper detox.
Instead of coffee enemas, perhaps consider professional colonics?
Chlorella and methyl B-12 injections are also very helpful for detox.
Whatever "big guns" you do for detox, remember even the little things that help like taking enough magnesium and vitamin C (at least 1000 mg/day of each) can add up enough to help you through these rougher periods.
I hope you feel better soon!
Posts: 408 | From California | Registered: Apr 2008
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seekhelp
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I think WC was made of titanium honestly. This advice may be true, but it's scary and a potential liability. too. I'd hate to see someone permanently damage themselves (if possible) if they can't detox.
There seem to be few, if any, on this board that can handle the type of dosing recommended. Is this just horrible LLMD advice and babying by them or something more? Are the LLMDs playing games? I don't get it. If it takes elephant or brontosauras dosages to cure, why aren't they just saying this when WC is educating them? I thought she has personally seen many of the LLMDs and consulted with them.
On another note, Massman and GiGi have said repeatedly any herxing is just a sign of poor detox and shouldn't be there. Some Inno-Vita supplements can fix all that or good AI therapy to get your body to recognize all the toxins and easily shuttle them out of your body.
quote:Originally posted by Erica741: Those are NOT high doses. Where is Wild Condor? She'd read you guys the riot act for calling these high doses!
You are only 2 weeks into treatment? Then what you are experiencing is a herx (die-off response) which is pretty much unavoidable. I don't know how anyone ever got the idea that treating chronic Lyme would be easy...It's absolutely BRUTAL, but those who buck up and push through the horror are the ones who will get better!
Toxicity can be a big factor in the herx, so detoxing should ease your die-off symptoms to some extent. I've found toxins to be major culprits in my neuropsychiatric herxes, so hopefully your worst symptoms will eventually calm down over time with the proper detox.
Instead of coffee enemas, perhaps consider professional colonics?
Chlorella and methyl B-12 injections are also very helpful for detox.
Whatever "big guns" you do for detox, remember even the little things that help like taking enough magnesium and vitamin C (at least 1000 mg/day of each) can add up enough to help you through these rougher periods.
I hope you feel better soon!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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canefan17
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I think you need to start from scratch.
I don't think your body is detoxing all of this properly.
Have you thought about doing a 3-6 week cycle of Salt/C and antiparasitics to clear some things out.
Get ahold of a good binder and drink a lot of lemon water.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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seekhelp
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Gary has stated often he did salt/C.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Gary has been on tons of meds over the past few months...
I don't think it should be ruled out!
Posts: 114 | From Atlanta, GA | Registered: May 2009
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massman
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Cold feet - my mistake, sorry. I had + read Murrays book in the late 1990's. Thought he was a DC. Bonked myself 20 times to get it in right this time.
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lymetwister
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I wasn't on anything long enough to cause yeast. This is the first time I was able to go 2 weeks on 4 different abx at once.
Woke up today Dizzy, Nauseated, Anxious, Balance off, Weepy, and a bit achy, and overall sick feeling.
I put my kids off to school and I'm balling tears like I'm never going to see them again, when in fact, they will be home in 7 hours.
I don't get it. Why am I processing these thoughts like this ? I keep telling myself, I am over reacting to everything, but yet I can't seem to control the emotions. This is very very scary stuff. I try not to let them see me cry, but when I'm crying constantly, it's hard not to. I try to tell them I don't feel good and I'm a bit scared with all that is happening to me.
My son, is just 9 and he keeps telling me I'm gonna be alright and that I'm just Herxing. He pats my back and I look at him and can't believe he understands more than the Dr.'s and even more that some that are close to me.
I think I could handle some of this better if I didn't feel the pressure to get well for my kids. My daughter is just 7 and it just kills me to not be able to do much with them.
They are my life, literally. Their mother isn't involved much with them, so I have to beat this.
I don't want to be posting on here in 5 years having made no progress. I see many here that registered 10 years ago and are so sick. I'm so scared that will be me and my kids will be in their late teens if that is the case and I will never be able to do the things I want to do with them while they are young.
It kills me just typing about it to you here to even think this way, but it is a possibility.
Gary
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massman
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IME when you are not doing well the emotional "stuff" can really be negative and really be strong.
Your kids sound pretty positive and that is great. That also means that you have done a really good job raising them, which is very important ! To me its the most important job most adults will have.
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I was diagnosed in 2005 and by then I was in such bad shape there are no words for it.
I never took more than two abx/mepron at a time due to such sensitivities and if you think the meds are killing you...listen to yourself!!!
But what I most want to say is I remember those days like you are having with the insane crying. I cried all the time for what appeared to be no real reason. It was pathetic, I thought. And when I took flagyl it got so much worse that I really had to stop that drug. It took about two to three years for that part of the lyme to heal.
These days my symptoms are mostly physical and I think it is more of an effect of the treatment or a morphing to MS than still dealing with lyme disease. I don't think this happens to everyone! I was diagnosed very, very late in the game. (and not to say the ridiculous crying did not have a physical base, but it was an emotional manifestation)
I truly believe that your kids will be the very thing to pull you through to the other side! Don't worry, just keep at it. It is definitely a very difficult and long battle. Rest when you can and keep enjoying your kids. Most importantly, keep aware of your own psychological response to yourself within this disease because this can take on a life of its own if you let it.
glm1111
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I don't think it's realistic to think that the body can shuttle out all of the dying toxins that easily.
If you have millions of organisms dying at once and all of your pathways are open, there is only so many that can get out at one time , even through the colon.
I have/had organisms come out through my skin, scalp, eyes, ears nose, mouth, and colon and was still herxing. Crying is just another way the body is getting rid of all the toxins.
It just makes sense that the toxins coming out are going to cause the body to react as in a herx.
I just don't think adding more supplements is going to eliminate any herxing, and it could possibly add another burden for the body to deal with.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sutherngrl
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Too many meds at once!
Any normal person would feel the same way you are feeling taking so much medication at one time.
I don't care what anyone says, its too much. You can get well without killing yourself with all that medication at one time.
I think you need to call you LLMD back and tell them you are having a hard time on all those meds. I would ask them to guide me in which ones I could leave off for now and which ones are most important for you to keep taking.
You can get well by taking medications in moderation.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Did you start them all at once? My llmd also prescribes multiple abx at high doses. However, when I first began, I started one at a time, and ramped up slowly.
Like doxy 100mg 2x a day for a week. Then, 200mg 2x a day for a week. Then began the next abx and so on.
I certainly still herxed, but they were tolerable.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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lymetwister
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I started all at once. I did ramp up, but only over a 3 day period.
I feel worse today than any day yet and I've been off for almost 3 full days now.
Next round will be different if I recover from this.
For the first time ever, a coffee enema made me feel worse today.
Will get to bed early tonight. God forbid I could sleep some of this off during the day, but my body won't let me.
I ramped up quicker than I should have, but I tolerated the first 3 days without incident except some loose stools. I know I know, it's pace not race. I don't mean to get to these points, it just happens. Everything I have ever done with this disease has been a learning experience the hard way.
I can't even sit in front of this computer today I'm so nauseated.
Thanks for all of the support,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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ping
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Hi Gary - Yes, an awful lot of meds and probably way too many supplements to which you're likely allergic.
Your Mepron and Doxy doses look right in line; no under-dosing there. (Can't remember the dosages for the others.) REMINDER - You can not take Mepron and Doxy together! A ga-zillion times, NO! The Mepron cuts the effectiveness of all Tetracycline derivatives by about 40-50%!!!
I think other posters are correct when they say you're way too toxic. Please ease up, and / or start over again and ramp up SLOWLY (as in possibly weeks, not days).
It's so difficult when you have numerous co-infects. Suggest you and your LLMD pick ONE of the abx that hits both Lyme and the Erlic. and that's 'Mepron friendly' (for Babs) and start with that one and the Mepron and build from there. DO get some Diflucan or Nystatin from your LLMD also and don't forget the enteric coated acidophilus.
I'm not a doctor, but I know I couldn't take the amounts that you're taking. Talk to your LLMD right away. Let us know what he or she says.
All the best to you.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sutherngrl
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I can certainly understand your desire to want to pack in the meds. Its like maybe it will make you well faster; believe me I have felt that in myself; but it just doesn't work that way. You actually hinder your recovery by doing this to yourself.
Take a few more days off, then start back a little at a time. You will get there. Don't expect something big to happen for a few months.
Just rest, detox and start again.....slowly this time, one med at a time. And remember many people cannot take such high doses or multiple meds, but they still can get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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dmc
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Icould never take LDN while on abxs.
I was on LDN for 2 yrs rior to finding out lyme.
As soon as I was doing abxs for the lyme my body reated similar as you.
I stopped the LDN for yrs while doing the abxs. If I tried LDN again while on abxs same reaction.
been off abxs and now can do/tolerate the LDN.
Hope you figure out what'll work for you.
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TerryK
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In my experience, it is not unusual to take many different prescription meds when dealing with multiple infections. I always introduced 1 drug at a time and in small doses, taking my time to build up. That way I could tell if I had a bad reaction to a drug.
Cholestyramine needs to be taken with another prescription drug called actos for most lyme patients. Some people can't tolerate cholestyramine but it is more likely tolerated by adding actos. Without cholestyramine and actos, I would not be able to handle the combos that I've taken. There are other, OTC biotoxin binders to consider so you might want to look into some of those. I don't know if you need actos with them or not but I wouldn't be surprised. I've heard beta sitosterol is one, then there is modified citrus pectin, Cholestepure by Pure Encapsulations, butyrate and probably some others that I'm forgetting.
When you are killing borrelia, metals are released. You need something to bind the heavy metals. This is what I was told and I've heard it from more than one practioner.
Keeping inflammation under control is very important when killing pathogens since killing them increases inflammation and inflammation causes a slew of symptoms. There are lots of OTC anti-inflammatories. Check with your doctor for help with that.
In addition to some of the other toxin removal methods that people have mentioned, drainage remedies can make a big differeence. My doctor ran some tests and said we were killing lots of bugs but we weren't getting the debri out of my cells. He said it is not unusual to see the C3D immune complex elevated in lyme patients. I used the Pekana drainage pack and still use drainage remedies. There are several brands. It took a month before I started to get improvement through drainage remedies. Initially everytyhing got worse. I assume this was because we were mobilizing toxins.
Having something on-board to help with anxiety and depression may be necessary early on in treatment. I can't advise you on what to take because I don't know all the meds that you are currently taking and some of the meds and supplements may interact but I have found GABA -500 2X per day helps a lot with anxiety and also seems to help me with depression.
Other things to consider are methylation testing or if you don't want to do the testing you may want to try to 5 supplements that are used for the simplified protocol. That could also make a big difference in your ability to detox.
It seems important at this time to track down anything that might be impeding your detox pathways and fix it. You may need to see an LLND to help with that although there aren't that many that seem to be well versed in detox for lyme patients however you may be able to find someone through ILADS. Luckily my LLMD knows a lot about these issues or I would not have been able to continue treatment.
I know how miserable it is. I herxed constantly for the first several years of treatment.
Wishing you the best, Terry I'm not a doctor
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springshowers
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Gary.
Do not push if that is what you think will get you better. You have been through enough now that I think you know that.
Slow down and.. 3 days ramp up is NOT a ramp up.
Start at MWF on ONE Drug until you feel you can handle the full dose or daily if even.
IF not talk to your doctor.
Oral meds can be much more brutal than IV meds.
Please do not ever compare your dosages to anyone else. It is not safe.... NOt safe whatsoever.
Those who preach about dosages may be putting us at risk. IF we could hanlde much more we can talk to our doctors and get their opinions and go from there.
It should not be from these boards.....or one person who did better on higher dosages.
(ps I did better on much higher dosages when doing IV meds. I could do and did well on up to 6 x the oral dosing I could do orally) WE are all different. I would never say anyone should try what I did or compare you to me.. It was just my experience. And it could be due to GI issues or such as well not just dosing.
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TerryK
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You are paying your LLMD for his/her advice. In addition, they are giving you prescriptions based on the understanding that you will follow thier directions.
I would be very careful about messing with your prescription dosing or schedule without checking with your LLMD. Most of them have the clinical experience of treating lots of patients + lots of education regarding lyme disease + discussions with other LLMD's and their experience + they know a lot more than we do about abx. You could be building some resistant bugs by playing around.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Ditto to TerryK's post above! That was pretty much my point...Your LLMD prescribed these meds and doses for a reason, and making any adjustments to his/her dosing protocol is just not a good idea. Borellia is a tricky enough organism w/o adding abx resistance as a possible additional complication.
Gary, I can hear your pain coming across loud and clear. You are getting a lot of well intentioned advice on this thread, but really you need to discuss your reactions and concerns with your LLMD. I know most LLMDs are very busy and it can take awhile to get a response, but please try that route before making any changes to your treatment plan.
One key issue I forgot in my prior post is the importance of being on the proper psychiatric and/or other supportive meds to help you get through your treatment. Neuropsychiatric reactions like what you describe are common during Lyme treatment (and generally unavoidable during Babesia treatment!). The proper supportive, stabilizing meds can make a HUGE difference.
Even just klonopin or ativan can be a wonder-drug for psychiatric herxes by calming down the brain.
Re. Sprinshowers' suggestions: I too have found IVs much easier to tolerate than orals, particularly with the psychiatric issues. I suspect it's because most IVs can penetrate the blood brain barrier a lot more effectively, and so can really get in and quickly blast the bugs. You get a massive die-off in the brain but if you keep up with the detox, it can be much less irritating on the brain (sort of like the analogy of ripping off band-aid quickly instead slowly peeling it off).
Pulsing is another option you could discuss with your LLMD. But you would have to take at least double your current doses for a M/W/F pulse to be effective.
Posts: 408 | From California | Registered: Apr 2008
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lymetwister
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I called my LLMD when this started. He said to back off a day and see how I felt and start back slowly.
Initial instructions were to go up on the Doxy as tolerated and to start 100mg 2 x day.
Same for the Mepron and to start at 1/4 Tsp per day. Nothing more specific than that.
I was told to take entire dose of Zithromax and Tindamax. I guess they could be broken in half, but wasn't told to do this.
The LDN, I was told to start at 2mg and work up to 4.5mg.
I swear,the first few days went so smooth, that I didn't hesitate to bump up to full doses. And it wasn't until day 12 that the bumpy road began.
As far as Psych drugs go, I can only take Xanax and other benzos. SSRI's are out as they make me so sick. I've tried some of the others and for whatever reason, I can't take them due to side effects.
Everyone I've spoken to tells me Oral is just as effective as IV. There is conflicting opinions about this. I was an RN for 14 years before I got sick, so even with that, I still don't know which is more effective with this disease.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Gary. I have notice you have a lot of trouble on Oral ABX and so have I for many years. I did IV abx and it was so MUCH different. It was like so much smoother and I tolerated it so much easier. Like I said we are all different. I was amazed at the difference though and I have no regrets doing it. I wish it lasted longer actually but I got sepsis and we just decided enough complications for me and my doctor felt I could do other things and continue to improve.
But after years of orals.. for me it was like night and day.. If I have to go back to abx in a serious way I am going IV for sure..
Maybe you never know til you try it. I had a Port and a Picc line too and for anyone who might have said that they ares similar they are not at all..
Let me know if you need to know any more or if you might be considering it
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Gary, Ive been under treatment for almost a year now and I feel your pain.
There has been several times (more so than not) that I have had to cut back on my meds --abx...supplements, artem, plaqueil, flagyl, etc. the list goes on and on.
My dr said I am very sensitive to medicines...so I have had a real hard time.
I have been where you are..so depressed, confused, angry.......
My point is, it will get better...try to hang in there. There have been days I just didnt want to keep doing it anymore.
Ive learned the hard way...if something isnt working or makes you feel too bad you have to move on to something else.
Its one thing having a herx and another thing when the meds are just not right for you at this time.
When I first got treated I was so confused but as time has gone on I have learned to listen to my body and go with my gut feelings.
Almost every thing I have taken I had to cut back as it was all to strong for me at first..
That includes EVERY abx Ive been on except bactrim ds as well as the plaq, artem, flagyl, nystatin....even the vitamins.
And I have been on a host of abx.
Zitro, minocin, rifampin, bactrim, omniceff.
I still get nervous when starting new meds...which I will be doing to day because you NEVER know how you're gonna react.
So good luck, and if you need to cut back...take it slow and steady... My LLMD said its not a sprint its a marathon. Just make sure you keep in contact and tell your LLMD how you feel and he will probably agree with you.
Good Luck and God bless,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
LLMD are paid to give advice on abx usage. They usually have no clue what all is involved in every patients sick body.
Just because some LLMD advised me to take this combo at this dosage is no reason for me to jump in the dosage without considering how they are going to effect ME.
It's our bodies, our illness, our he!! and we are in charge of everything that has to do with it.
This illness is about so much more than just taking abx. The picture is so huge, one can't see the forest for the trees.
No matter how much you pay a LLMD, they are not in charge of your health and well being. You are in charge. One must take charge and know or figure out what is best for them.
Just because so and so was able to take such and such meds and supps, doesn't mean that this is the road that is right for you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Update,
I'm pretty sure lymetwister was to start a whole different protocol last week - or this past week - so the details in the first post of this thread would be out of date, with his last post of 3/2. His has another more current thread about that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Burber tincture can help lessen the effects of a herx, so you might try that. 9 drops in a glass of water every hour if necessary. You should take milk thistle to protect your liver and drink lots of water.
Personally, I think you're on a good regimen. I've been on 3-4 antibiotics at a time in the past, and it helped. However, if the herxing is really severe, you might back off for a day or so until you start to feel a little better, then start up again. Don't be fooled by feeling better, however. You have to keep treating.
Unfortunately, there's no way around herxing, IMO. Although detoxing should help some, it never got rid of all of the herxing symptoms for me. I also felt as if a coffee enema made me herx.
Posts: 975 | From California | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am eagerly, eagerly, eagerly awaiting Gary's update about his visit with LymeMD! I hope he comes back sometime to tell us!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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