I'm diagnosed with lyme for 99% sure for about 3 months ago after having a lot of health problems for over 15 years! And being misdiagnosed with panic disorder, mentale disorders, chronic fatigue syndrom, etc.
After having to courses of doxycycline for 7 weeks and 9 weeks i'm only feeling worse. Except for the beginning of the treatment then i felt a bit better.
I convinced my doctor to subscribe me questran (unfortunately onely the a-version with aspartame is available over here at the moment) while i think i mostly suffer from (neuro)toxins. I started the treatment yesterday and i'm curious wich side effects i might get. Thusfar i have: 1) extremely dry mouth 2) diffuculties finding words 3) extreme tiredness in my head and periods of continues jawning 4) a bit more anxious
I'm using half a bag now which equals 2 beams.
Thanks
Posted by Lymetoo (Member # 743) on :
WELCOME!
It will be hard to tell if your symptoms are from herxing or the Questran. Be sure you are taking the Q several hours away from any other meds.
Questran can cause "an intensification" of symptoms .. so just be aware of that. It can also cause constipation. Do whatever is needed to prevent it.
Also know that herxing will worsen in 3-5 wk cycles.
Posted by Judie (Member # 38323) on :
The symptoms you describe sound like they're from Lyme. What was the doxycycline dosage that the doc had you taking?
It doesn't sound like you're on the proper amount of antibiotic treatment. I didn't have much progress on doxycycline until I added other antibiotics to the mix like ceftin.
I don't think doxycycline alone is the best treatment for Lyme that's been lingering for several years (or for new infections for that matter).
You could just be having an increase in symptoms because of under treating.
I wish questran caused constipation for me. I've had non-stop diarrhea for over 3 weeks and I started taking 2 packs a day a week ago (the doc thought it would help). No dice.
The first 2 days I notices some itchiness when I started questran. That went away though.
It's been pretty mild on any side effects that I can tell.
Posted by nikkabelle (Member # 43604) on :
My only side effect had been constipation. It can really affect you in this way.
Make sure you drink lots of water, eat vegetables/fiber, take stool softeners as a preventative if necessary. I was fine the first week and then it hit me out of nowhere. Just be proactive with that!
Posted by jayz (Member # 43741) on :
The doctor prescribed me plaquenil besides the doxy a about a month ago but it wasn't tolerable for me. Doxy (2x 200mg a day) also made my symptoms worsen the second course i took it. I also tried claritromycin 2x500 mg a day but that worsened it also.
Because the symptoms intensified a lot during the treatment, the doctor thought me body wasn't able to handle the antibiotics at that moment anymore. I think it's the toxin of both the antibiotics and lyme that it's causing the problems, that's why i want to try the questran.
The doctor (who is a Lyme specialist) wants me to also start the claritromycin again but now in a lower dose, 2x250 mg a day and then built it up.
I'll wait with the claritromycin till i'm on 1 package of questran a day, so if i get side effects i know where it comes from. I've too often started 2 meds/supplements at the same time and then you won't know which is causing what.
I'll hope the questran cause some constipation I have a sticky stool for over 3 years now so maybe the questran may fix that a bit
EDIT: What is the suggesed dosage?
Posted by Judie (Member # 38323) on :
Yes, start with 1 drug at a time so you know what you're reacting to. I've made the mistake of taking too many things at once and then not knowing what's causing what.
I was just asking about the doxycycline because a lot of none-Lyme docs under treat and just give people low doses. It sounds like you have good doctor though.
Dr. B has guidelines for drug dosages. The doxycycline sounds right, I don't know the other antibiotics well enough to comment, but some combos with doxy with worked great, while others were terrible for me.
I've had different docs give me different questran dosages. One had me start on like 1/4 teaspoon of the compounded stuff. I couldn't tolerate it (this was a couple years ago). It felt like there was a brick in my stomach.
I seem to be fine with 2 packets right from the start now. I don't know what the standard is. I read online that some people do 4 packets per day.
Posted by jayz (Member # 43741) on :
And do you have the Questran A or other? I prefer the stevia version (while stevia might even has advantages in Lyme, while it's supposed to open cysts). But the Stevia version isn't available over here
Thanks
Posted by nikkabelle (Member # 43604) on :
Has anybody else experienced any other side effects on this other than constipation?
Posted by dmarie725 (Member # 43094) on :
Curious about this too -- I may start soon. Does constipation seem to be the main side effect of this stuff?
Posted by jayz (Member # 43741) on :
I'm using it for about 2 weeks now and i've onky became worse with it. It"s a pity we don't have the sugar or Stevia csm :-(. I'm using the questran-a with aspartame and i don't like aspartame at all.
My side effects or worsening effects are: 1) more and more fatique 2) more and more headache. More pressure but also more tingling/burning/itching/etc 3) i'm feeling more like i'm not really present, like being in a movie. 4) more and more anxiety also due to that werd feeling 5) extreme thirsty / dry mouth 6) in the beginning more diarhea but now it seems that i'm getting a normal stool again.
I'm now at twice a day about 2 grams. Upped this to about twice 2,5-3 grams but that made side effects so big i had to reduce it. Because of the upping i was exhausted!
Posted by applewine (Member # 26220) on :
I looked it up and read it is a cholesterol lowering drug. It may be a statin. In general I normally tell people to never take a cholesterol lowering drug. They can have very bad damage to the body causing a number of diseases.
I would instead suggest a person to learn about cholesterol research, tests and statistics related to disease. It is complicated, but as I understand there is a lot of popular myths about cholesterol that do not reflect the facts. Doctors as well as the general population seem to buy into these myths without checking.
It may be possible to alter the diet to improve cardiovascular health and the causes of cardiovascular disease if that is the concern.
There are various theories as to the cause of cardiovascular disease. Some say it is too much carbohydrates and a bad type of cholesterol, others say it is related to something else I can't remember the name of.
Posted by Judie (Member # 38323) on :
Applewine - Cholestyramine is not a statin. You actually take it AWAY from food because it's not being used for lowering cholesterol in Lyme patients.
Jayz - It's good that you cut back. CSM might be draining you too much.
I have detox issues too and there are gentler ways to do it, so you might not need CSM or you can at least be on a lower dose.
I'm taking Toxin AbsorbMax and it seems to help.
Posted by jayz (Member # 43741) on :
What are good other options?
Posted by TF (Member # 14183) on :
Welchol pills. They are weaker but are better tolerated.
See page 13 of Burrascano's Guidelines where cholestyramine and Welchol are both mentioned for binding toxins. He says to take 3 Welchol pills twice per day.
Posted by jayz (Member # 43741) on :
I don't think we have welchol over here. I'll find out about that!
Posted by CherylSue (Member # 13077) on :
I started with 1/2 packet of Cholestyramine and had a horrible reaction. Lightheaded and loopy. I felt awful for 1 1/2 days.
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![[Wink]](wink.gif)
I have a sticky stool for over 3 years now so maybe the questran may fix that a bit ![[Frown]](frown.gif)