I was told that I have CFS earlier this year then Lyme and Babesia in Sept.
I've been taking Zithro for about a month and a half and I started Flagyl about 2 weeks ago. My symptoms have gotten much worse once I started the Flagyl and it is really scary. My stomach is constantly upset, and I am not throwing up but I feel like I always have to, my appetite has gotten much worse, my fatique and lightheadedness, light/sound sensitivities are much worse as well.
I've already lost like 20 pounds since March when I relapsed and I can tell that I have lost more weight in the past 2 weeks which is really starting to scare me because I cant hold anything down and I pretty much have no appetite.
I just feel like I am slowly dying and dont know what to do. I dont know if I am worsening because of a herx from the antibiotics or if they are just further damaging my immune system. I really dont know what to do.
Posted by sutherngrl (Member # 16270) on :
Something similar happened to me so my doctor decided that it was because of Babesia. Babesia will keep you from improving; it's also a reason that people relapse. I too have nausea and weight loss. Just started treatment for Babesia 2 days ago.
Posted by Clint31 (Member # 16420) on :
I have that feeling as well, the slowly dying.
Everytime I think I've turned the corner I have a sad reminder that I'm still stuck in this state of illness.
I can't do much at all or I get very dizzy. Living a normal life is not even a question right now. I go nowhere. I do nothing most of the time.
Posted by AZURE WISH (Member # 804) on :
Do you think it is a herx? Flagyl herxes have been some of the worst for me.
I have to make sure i drink enough water or it makes the herxes much worse for me.... for some reason even more so with flagyl.
There has been times when the babs had my 5'5 frame down to 101 pounds.
I have lots of lightheaded/dizziness and stomach issues which i am guessing are from the babs for be although i do have both lyme/babs.
I hope it is a herx and you start to feel better soon.
If you are concerned or cant stand the severity of your symptoms you should call your dr and see what he says.
Posted by llelnino (Member # 16067) on :
Hello all I havent returned to taking the abx because I felt that they were doing much more harm than good. My stomach was very sensitive to them. I feel that the Flagyl is what really messed me up but I couldnt tell if it was a herx, side effect or if its just that I am not able to handle them(sensitive) I am at a loss as far as what is really affecting me.
Posted by gemofnj (Member # 15551) on :
Wow, I cant imagine recovering without antibiotics.
I wonder why your LLMD didnt suggest cutting back so that you felt a little better and then ramped up.
There has to be other options. Check with your doctor. Dont give up!!
Posted by jl123 (Member # 15594) on :
I think many of us need to really start considering whether herbs are better and safer for some. ?? JL
Posted by tickbattler (Member # 14873) on :
Sorry to hear you are so sick. If I were an LLMD, this is what I would do. Start treating the babesia right away with Mepron and Artemisinin and zithromax, if you can handle it.
Based on my research, I think the babesiosis is causing you to lose the weight. Anorexia and loss of appetite are classic symptoms of babesiosis. You need to get that under control now.
My 4 year old son has babesia and has lost his appetite. It is a struggle to get him to eat. Some nights he vomits. But he is getting better, especially b/c we added artemisinin.
Dr. J (the most famous pediatric LLMD in the country) said that some strains of babesia are resistant to Mepron and need to be treated with artemisinin. He uses both at once (along with an antibiotic) just in case. He said the Mepron can also go after the cyst form of lyme.
Flagyl is very hard to tolerate and could be the cause of your stomach upset. I am surprised your LLMD was not treating the babs first, and most LLMD treat coinfections before treating the lyme.
I would recommend reading Dr. Burrescano's slides from a recent lecture I attended which give up to date treatment info. Go to lymepa.org and you can find them there. He is the "god" of lyme in my book! He says to treat coinfections first.
Good luck to you.
tickbattler
Posted by jamieL (Member # 16563) on :
I hear Tindamax is also good for the cyst form and is better tolerated than the flagyl.
Posted by llelnino (Member # 16067) on :
I started with Zithromax and Mepron a month before I started the Flagyl. The Zithro did affect my stomach where I had watery stools several times but not like when I started Flagyl. Once I was on that all of my symptoms were magnified like 3 times and i went from poor appetite to no appetite. I had already lost like 20 pounds since March but the couple weeks on Flagyl I could see that I quickly lost like 10 more pounds which was very scary. My stomach was very unsettled. I really didnt feel any herxes or changes the 7 weeks that I was on Zithromax and Mepron.
Posted by richedie (Member # 14689) on :
I also lost a lot of weight with Babesia and my apetite was bad, lots of nausea. I have been on Mepron and Azyth, but no Artemisinin! My doc never ever mentioned this! Should I ask? I also don't really herx. Sometimes I feel like I am not even taking medication, nothing really affects me either way. I also take Ceftin. I feel like I could double the dose and still not notice.
Posted by tickbattler (Member # 14873) on :
richedie,
Dr. J said that he is seeing a lot of babesia duncani in PA (where we also live), which is resistant to Mepron.
I found it interesting that my son's night sweats finally disappeared about 2 weeks after adding the artimisinin. He had been on Mepron/zith (and bactrim for bartonella) for a month and I noticed a slight descrease in his fatigue but it did nothing for the night sweats.
Just curious, who is your LLMD? Do you see Dr. C in Cocharanville, PA? Dr. B in West Chester, PA?
Thanks,
tickbattler
Posted by lymeinhell (Member # 4622) on :
Could be fungal die off from the flagyl (which WILL make you nauseous, give you the runs). Are you watching your sugar and carb intake - bread and starches and sugars are a no no. Are you taking loads of acidophillus 3 x a day?
Flagyl also breaks open cyst form of lyme which will make your symptoms feel worse. Not sure what dose you're taking, but maybe you need to start slow by taking smaller dose and work your way up.
As Jamie mentioned, some people find Tindamax a little less rough on their system.
FWIW, I spent 9 months on Flagyl and I know it seriously helped me.
Posted by llelnino (Member # 16067) on :
I went to see a nutritionist over the summer who corrected my diet so I have been doing my best to cut out sugar, bread and dairy. I really havent had much of a change. No better or worse since changing diet. I was on 250mg of Zithro 3 times a day and 375mg of Flagyl 3 times a day and 1 1/2 tsp of Mepron 2 times a day.
Posted by Peedie (Member # 15355) on :
llelnino Hi. I'm sorry you are having a tough time of it. I was wondering, what else are you taking - what supplements and vitamins? Also what are you doing to detox? Like Lymeinhell said there is probably a lot of die off and so you need to detox. Most important - are you taking a probiotic every day? Azure Wish says some of her worse Herxs were from Flagyl. I think along with the physical aspect of the Herx, we must remember it is also very very depressing. I hope you feel better real soon. -p
Posted by llelnino (Member # 16067) on :
I was and am still taking 3 Source Naturals Chorella tablets 3 times a day and 1 Theralac pill every night.
Posted by Peedie (Member # 15355) on :
I think you are toxic. Please talk to your LLMD about this as your body will not assimilate the abx properly if you are toxic. Abx will actually add to the problem - if that is the case. Couldn't hurt to inquire - right? I hope you have a better week-end. -p
Posted by CherylSue (Member # 13077) on :
Mike, your mailbox is full, but this is what helped me after trying and spending $$$$$ on supplements, treatment, etc.
First, find yourself an experienced and renowned LLMD.
Doxycyline not only helps Lyme, but babesia as well. 200 mg twice daily should help.
Take nystatin 2 pills twice daily while on abx.
Ceftin also helps Lyme.
Methylcobalamin B12 shots help with energy, neuro problems and babesia.
Proboost 3 pkgs a day sublingually for 6 months, then 2 pkgs, and then 1 day for maintenance. Helps with EBV and possibly HHV6.
Epicor - 1 daily forever. Takes 3 months to become effective. Takes a year for optimal effectiveness. Will help you avoid flu, colds, and viruses.
Do the whole lemon/ 1 tblsp olive oil in 1 cup water drink. Be sure to strain after mixing in the blender. Drink liquid. High vitamin C and good liver flush. Great for herxing.
Activated charcoal. Cheap at your druggist. Take 2 hours away from your abx and supplements. Great for those yucky herxing moments. Take 2 pills every 4 hours if needed.
Pure Encapsulations .6 mg melatonin at bedtime to help with sleep.
Pure Encapsulations brand St. Johns Wort for depression. 1 at bedtime for 3 months.
Patience, patience, and more patience.
Good luck.
CherylSue
Posted by bettyg (Member # 6147) on :
so sorry to read this; i'm beind in reading...
no experience on this but you are getting good ideas from others! best wishes to start putting back on weight. Posted by Cass A (Member # 11134) on :
Personally, many years ago, I had a terrible reaction to Flagyl.
Global amnesia.
Truly.
I "woke up" to find that I was sitting in a chair holding something in my hand, and didn't know what it was, where I was, what I was supposed to do, how I got there....
I had to figure it all out...ah, writing! Ah...an address! Etc.
Very scary.
Sometimes I think we presume that adverse reactions are "herxes" when they can really be adverse reactions to the drug.
Have a look at the drug insert or look it up on line.
Talk to your LLMD about this.
Best,
Cass A
Posted by Shosty (Member # 12232) on :
Are you still on abx / Flagyl? I am having trouble with the chronology here.
If flagyl caused GI inflammation, or abx caused yeast, then you could:
First, stop all meds
Treat yeast w/fuconazole 200mg (at least) for 4-6 weeks, with or without Nystatin
Make sure you are taking the best probiotics
Get an RX for Gastrocrom liquid to take before meals and bed
Identify food allergies from leaky gut (caused by meds) by doing an elimination diet, then reintroducing foods one at a time to see which ones cause problems
Take Sustain of some other product to make sure you are getting nurients needed
Avoid anything new via GI tract until your GI tract is better
If you resume meds, start one at a time at very low doses, work that one med up to the best dose for you, and only then consider taking another med that you need
This worked in our family, may not work for others. In fact, this program worked miracles. It is a big mistake to blame everything on tick borne illnesses and/or herxes. It is good to do things in a way that helps identify if the problem is a med.
If a problem starts or gets much worse on a med, and seems dangerous, then even if it IS a "herx," the med should be stopped for a while, then restarted more carefully. But sometimes it really is a side effect, not a herx.
Posted by Vermont_Lymie (Member # 9780) on :
Sorry to hear that, hope you feel better soon!
Just want to share one point from my experience with lyme and babesia. I have recovered from serious illness with lyme and babesia without the use of flagyl.
I did try it for three days, but that was about all I could tolerate (and not well) early on in treatment. If one particular treatment is making you so ill, then speak with your doctor; there are lots of alternatives. I have taken plaquenil for over a year, for example, along with other abx.
Posted by llelnino (Member # 16067) on :
Thank you all so much for all of your thoughtful opinions. I had to cancel my LLMD appt due to financial issues. I will try to get another appt later this month.
I have had appeptite issues since first getting sick but on the meds it just got much worse. Since stopping abx my appetite is back to what it was prior to starting Lyme/Babesia treatment which is still bad but those meds really were doing more damage.
I dont know what I will try next and if I should go see another LLMD even maybe a LLND. These are all questions that I have been asking myself.
I really even question whether or not Lyme/babesia is my problem and wonder if it is not the cause but an effect and that maybe I really have CFS(based on Chronic EBV levels). Maybe I will just need to accept this as hard as it may be. All of my future hopes and dreams are just a fantasy now.
Posted by LymeCFIDSMCS (Member # 13573) on :
You might want to ask your doctor about trying antivirals along with antibiotics, if your EBV titers are high. Some CFIDS patients are having success with Valcyte, though I think the older antivirals (Valtrex, Zovirax) might hit EBV too.
Posted by luvs2ride (Member # 8090) on :
llelnino
I agree with the others who suggest looking at leaky gut issues. Good for you that you went to a nutritionist. Keep that up. Eating right doesn't give overnight results but it is the slow and steady champion of our fight to get well.
I too have babesia but I no longer have symptoms. When I first met my LLMD, she found the babesia, but she also found H. Pylori. H. Pylori is a bacteria in the gut that causes ulcers and ultimately stomach cancer. I had been treated for it in 2004, but I have learned it can come back again and again. She treated the H. Pylori for 7 mths with ammoxycillan, biaxin and prevacid which she said would also combat the babesia. I felt great within 30 days but she kept the regimen going to combat the babesia.
Later she switched me off the drugs and used 4 weekly IVs of MTE9 which is an herbal combination against Babesia. After 4 treatments I got my first negative Babs test. But the second test showed the Babs was back again.
I feel the MTE9 was very effective but we just needed to do it longer. It is painless with no herx reaction. Since my LLMD is 3 1/2 hrs from me, I just found it too difficult to make the trip weekly and it is costly.
Dr now has me on an oral herbal parasite cleanse which is also supposed to be very effective with Babs. I don't know. I have no symptoms which is the great news.
Until the H. Pylori was treated, I couldn't get my stomach issues to settle down, but since then my stomach is great.
Keep up the good diet. It is the foundation to healing and will help the other treatments. Ask your doctor to test you for H. Pylori too, it may be your stomach problem.
Posted by llelnino (Member # 16067) on :
Thanks guys,
Out of desperation I made an appt with a CFS doctor in Michigan that treats with antivirals. I now am kind of scared to treat because of the reactions I had with antibiotics. I am looking to find a homeopathic/naturopathic doctor that can look at things as a whole.
I do feel that I might really have babesia but I'm not too sure about Lyme. I feel that the babs might be more of an effect rather than a cause for my poor health.
I will also look into H.pylori as well. I am just trying to find out what made my EBV levels to get so high. I hope to know but maybe I will never know.
Posted by ICEiam (Member # 7519) on :
From what I understand many people with Lyme and CO also have the virus infections you speak of. EBV, CMV, HHV-6, and the gut issues seem to be
the ones I hear of the most. Our LLNP and LLMD say it is because the immune system is compromised so it isn't able to fight off the things it is supposed to.
You might also want to check the HLA DR-4 genes. The people who have this need to detox, detox, detox, as they aren't able to do it on their own.
You can find more information about the HLA genes on Dr. Schaller's web site. I believe it is in the articles section.
Scott, The better health guy also has some information on his web site about it. He is very knowledgeable and helpful too.
A LLNP is very helpful with the detox issues. Just some thoughts that might help you. Good luck. Hope you feel better soon.
HUGS,
Posted by tickbattler (Member # 14873) on :
For what it's worth, I think it is very rare to have babesia and not lyme along with it. Have you spoken to anyone else who has just babesia?
tickbattler
Posted by llelnino (Member # 16067) on :
ICEiam
I actually was in contact with Scott(BetterHealthGuy) and he helped me interpret my HLA DR-4 test results but he said that my results showed that I was not susceptible because my results did not show anything significant.
Ticbattler
I havent really spoken to people with just Babesia but I've heard of people having only Babesia. The symptoms are never the same they are always all over the place. This is what makes me wonder what the real problem is also there is so much dispute as to what the root cause(s) are.
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so sorry to read this; i'm beind in reading...