What if every medicine I try makes me so sick that I have to stop?
Do you persevere despite your body begging you to stop?
Right now, the treatment/herxing/side effects etc are worse than the disease itself for me. I feel worse on meds than off.
WHY? and what do I do? I am so discouraged and scared I will be sick forever. Nobody understands. Everyone in fam and friends says just stop treatment.. but I want to beat this.
And what if I do all this and it isn't Lyme...I have IgM positive bands 23 and 41 through quest.
Any advice is appreciated.. I just can;t live like this. You all are stronger then me Renny
Posted by Lymetoo (Member # 743) on :
Yes... the treatment is worse than the disease. It happens to just about everyone. Some LLMD's allow you to briefly stop the meds (like a day or two) if the herxing becomes too severe.
It sure worked for me!
I didn't do much detoxing, but that should help also. You ARE strong enough! You can do it!!
Posted by sutherngrl (Member # 16270) on :
If you can't handle aggressive treatment, do low dose therapy. I for one did not do aggressive treatment. I have treated with low dose therapy for 3 years and am almost in remission.
Posted by renny1985 (Member # 25222) on :
I am reacting to even low dose treatment right now. At what point does it get easier? I have been treating since April 2010 but since October 2010 my body has just been struggling immensely.
I really haven;t done any detox.. I wish my doc would help me with that because the threads on it overwhelm me (so many options, not sure how things will effect me, dont want to take ANTHING extra, no $$ left etc.).
Thanks for the encouragement. I dont feel strong. I dont know how you guys did it/do it.. I do not want to spend another day feeling this terrible.
(PS- I just took a 10 day med break as directed by LLMD.. i was started to do better and then bam, two days into treatment again, I am sick as a dog.)
Posted by Tish (Member # 18029) on :
When I started out, there was no way I could handle antibiotics. So, I did the Cowden protocol and started out with very small doses and worked up. I got stronger over 8 months and now can handle most antibiotics and other meds pretty well. I think the problem is that after a long undiagnosed sickness, the body is too weak and messed up for stuff that normal people can handle. Treatment has to start out slowly and patience is needed.
Posted by renny1985 (Member # 25222) on :
I have been sick for 15yrs (approx.. kind of unclear) and was misdiagnosed many times.
I have been treated with all sorts of things prior to my diagnosis in april 2010, including steroids.
I will look into Cowden. Thanks.
Posted by apljack (Member # 14233) on :
A very simple way to detox is to just add lemon juice to your water. Try to drink at least a few glasses a day. Keeps some of the edema down too if you have an issue with that.
Keep lemons in the house for this and order water with lemon when you are out. Try to do this every day. Every little bit helps.
Some LLMD's are the low and slow type, so you're not the only one who can only handle so much. Good luck.
Posted by Susie R (Member # 30780) on :
I'm watching my son suffer with Lyme. I found this on the Internet and I think it is good advice. I am so sorry you are suffering.
Thank you all for your comments :-) @ Tish, I've been feeling really discouraged about treatment and enduring the pains, but I've had Lyme for a long time and will have to endure a lengthy treatment as well. All of your comments have been encouraging for me to read today. Thanks again and ALL take care.
Posted by Lymetoo (Member # 743) on :
baboosh.. this is an old thread. I haven't seen Tish in ages.
Posted by poppy (Member # 5355) on :
You might want to review the other threads about people in this same situation, and the advice that was given about getting tested to see if there is a genetic explanation for your reaction to drugs.
Consider buying a rife machine. It kills microbes with low-level Hertz radio waves.
It could replace your antibiotics. I've been off antibiotics for 2 1/2 years , thanks to my GB4000 rife machine. There are other brands.
It's a miracle machine, in my opinion. I'll never take antibiotics again, ---- the rife machine works.
I can't understand the widespread ignorance. When people in the media get hysterical about drug-resistant organisms, they say certain diseases have "no treatment"---- how is it they don't know about rife machines???
PollyPolygonum
Posted by tickled1 (Member # 14257) on :
Try drinking plenty of lemon water. Don't use bottled lemon juice but real lemons, organic if possible. I think one LLMD told me the juice of 4 lemons per day in water.
I also got relief from using Nutramedix Burbur and Parsley detox drops in water.
How's your diet? If I don't adhere to diet I feel much worse. Make sure you're not eating gluten, dairy, or sugar. Have you been tested for food allergies-both delayed (Igg) and immediate (Ige)? This could be important.
I also couldn't tolerate even baby doses in the beginning. Bacterial load was just too high and die off too much. Body couldn't detox the die off fast enough. I now know part of the reason for this is that I tested positive for a lot of detox issues.
I have MTHFR (homozygous C677T), KPU, and HLA-DR genotypes that can't detox Lyme or Mold toxins. However, I can't tolerate the things that are supposed to help these things like cholestyramine, CORE or chlorella and have to keep it simple with things like lemon water, Burbur and Parsley drops and diet.
Hang in there. Things will get better.
Posted by Bugsy (Member # 37572) on :
I agree with Tickled1, diet. I have been fighting a gut infection which is yeast overgrowth. I started a diet called GAPS (google it). If your gut can't handle what is going on then it will affect your treatment. I've been doing the diet for a week now and tell a difference. I'm not doing abx instead I started Mega Vit C IV and they are helping to clear up things. I'm not saying it is gone yet, but I still feel die off but not bad enough to put me down for days. I think I'm also going to be one of those people that can't handle abx. I've always done well on natural and homeopathic treatments for other thing in the past. The LLMD that is working with me here in FL is both MD and NP. Going back to the GAPS diet, what I like about it is that it goes back to basic. When your sick and your body can't handle food, you eat soups. This diet starts you on soups and then works you up to other helpful foods as your body can handle it. Hope this helps.......
Posted by AuntyLynn (Member # 35938) on :
Bugsy -
Please tell us more about your IV Mega C tx!!!
I am a HUGE FAN of Dr. Linus Pauling and his theories ... and his book
"How to Live Longer and Feel Better."
It told of how Pauling and a Scottish colleague brought "hopeless" cancer patients back from the brink of death with Mega IV C!
How much are you taking?? (I've heard 50 gm/day, or more, is typical.)
The famed nutritionist Adelle Davis was an adherent of Pauling's work.
She called Vitamin C "the great detoxifier" in that it "scavenges" pathogens (and waste products) of all kinds from the body, so that they can be eliminated through the kidneys.
Based upon Davis' words, I have made recommendations to folks who suffered from chronic respiratory infections or asthmatic allergies, that they take at least a gram of C per day. Often I would hear reports months later, that these people had experienced a noticeable reduction in their usual number of annual respiratory infections, and/or reduction of asthmatic responses to typical triggers.
Vitamin C "cleans house" - so why wouldn't it work for 1) detoxification, or 2) helping to clear pathogens that cause infection?
Posted by MannaMe (Member # 33330) on :
My husband is taking around 15,000 mgs of vitamin c per day.
He had started upping his amounts of vitamin c before his diagnosis of Lyme. As his C increased he was feeling better. He took 20,000 mgs per day at the most.
It is best to take it throughout the day and not a whole lot at once.
Posted by AuntyLynn (Member # 35938) on :
MannaMe -
I took 5gms a day for quite a long time. (5,000 mgs), after I started taking 10gms (10,000) as a "control" for a very ill loved one.
I really think it helped to keep my perio disease at bay, and I now regret having dropped it down to about 1,200 per day.
Yes, divided doses will make sure the C is used by your body instead of dumped as "extra." Breakfast, lunch, dinner seemed easy for me.
Any one who wants to try this should start by taking lower amounts 500 mg 2x day, and work their way up... your body needs to start making the specific enzyme to break it down. At any time, if you get the "runs" cut back the dose a little as you have "maxed" what you can handle at that time. But this is rare, and C is absolutely non-toxic.
I like plain old ascorbic acid, but WITH Bioflavonoids - rutin, rose hips, alfalfa. Solgar makes a couple that have never ever given me any stomach irritation.
Do you have a particular brand that you like MannaMe?
Posted by Lymetoo (Member # 743) on :
RENNY has not posted in well over a year .. you are speaking to the wind.
hopefully, someone will benefit from all the responses Posted by Catgirl (Member # 31149) on :
chuckle....I hope Renny got treated.
Posted by poppy (Member # 5355) on :
Makes me wonder how Renny is doing now. That's the trouble with these forums.....people ask questions, tell you their problems and you never hear how it turned out, whether the advice helped. They just disappear or stick around and never tell you the outcome. Very frustrating.
Posted by Bugsy (Member # 37572) on :
Hi, Sorry to get back so late. I have been doing IV C 50 grams 3X a week for 10 treatments and then review with LLMD. When I first started I had so much energy for the first two treatments, then I crashed for about two days (went through the weekend feeling bad, but came out of it). On my third treatment I started to come back again and have been slowly but surely moving forward. Next Fri is my last treatment, but may continue if Doc says too. I already saw the Doc and he is going after my Babs with Byron White Formulas called A-Bab (http://www.townsendletter.com/June2012/anderson0612.html you can read the article and case study) and he is working with my Homeopathic Doc in MI. I feel I have a good team working for me. I�m also doing the GAPS diet so I don�t give yeast or fungus anywhere to thrive and heal my gut so it will start to do what it�s supposed to do to help me heal. The C has given me what I needed to heal my skin and push out the junk in my system. I feel it has helped my adrenals and my head feels clearer more than foggy. Although I do have new skin issues, they come up but clear faster than before. They still believe my liver is not working the way it should, so we are still working on that. Hope this helps. Oh one more thing, I do know that for me I can�t handle taking oral C in high doses because it makes my skin burn but I have no problem with the IV. I did have to get blood work done to make sure I had, I believe it was a particular enzyme before they stated my treatment and I did.
Posted by AuntyLynn (Member # 35938) on :
Bugsy -
This is very exciting that you are trying IV C! Wouldn't it be great if we found that a natural substance could work as well as abx, or better?
With your repeated mention of skin problems, I wonder - have you ever treated for parasites?
I never had to deal with anything more than run-of-the-mill zits (thank goodness)! But I found that a freshly cut slice of lemon dabbed on a breakout after washing, worked wonders in no time at all.
Best luck with your treatments, and please do keep us informed as to your progress.
Posted by Keebler (Member # 12673) on :
Topic: RIFE Machine - Reference LINKS -
Posted by Keebler (Member # 12673) on :
- Geez,
I did not read the date on the initial post, nor the replies. Wondering if Renny replied, I popped back to this thread, this time I did read some replies and then came to an astute TuTu telling us:
"RENNY has not posted in well over a year .. you are speaking to the wind."
Glad to see that now. -
Posted by Bugsy (Member # 37572) on :
Keebler,
Opps me too, didn't look at the date until tutu brought it up. But I kept posting to answer ?
I post under something else to keep you all up on any good new on IV C.
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