posted
Seriously, I can't take this. I've been on mep/zith for 4 months. Can't tell if I am getting better because lyme and bart are having a party. I think, not sure, I still have air hunger, but maybe that's the anxiety??? Also, i had a dizzy spell today and that hasn't happened in months and now I am freaked out again. I live in fear of having a stroke, seizure or heart acttack even though none of those has ever hapened. I just feel so odd/off (in addition to more specific pain and sx) that I feel like something weird must be about to happen!
I'm thinking i should quit babs meds and turn to bart/lyme. so confused about what to do Posts: 342 | From Philadelphia | Registered: Dec 2011
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gmb
Unregistered
posted
Hang in there, four months is not that long to be fighting babs. I'm surprised that your LLMD is not hitting lyme at the same time with either Cipro, Omnicef, Suprax, etc. Bactrim DS is a also good combo with mep/zith.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes, this will teach you patience my dear, patience. The episodes that happen can be scary.
Sounds like you have alot of anxiety. Anxiety stress is a killer with this illness. Avoid letting yourself get stressed. Much easier said than done.
Find some supps that help with those sx like anxiety/stress. Also detox is key. Got to get rid of the dead stuff, it makes everything worse.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Yes, I am very very stressed. I used to be the most chill person. Rarely ever anxious. Now I feel completelt freaked out every single minute.
I've only been treating since May, but I thought I'd have made some progress by now. Actually, I was. I was feeling decent except for air hunger so I paused on Lyme abx and started babs meds and now i am so much worse Posts: 342 | From Philadelphia | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Very normal. Detox, detox, detox! That's more important even than killing, IMHO...
If you can do nothing else, dry skin brushing or foot soaks or sipping lemon water is even good to do for detox.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
When is your next LLMD appt? Can you call them for reassurance?
I'm not too good at this stuff, but it seems to me that "air hunger" could be part of the stress itself, not just the toxicity and infection.
If you have any brain focus (as many of us do not) try to work on some destressing techniques. Maybe find some tips on the web. I know they are there, just not sure where. Sry..
Either way, Sending you a big hug and hoping it gets better soon.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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posted
Took me 7 months on IV plus orals to see the light of day. Yes, detox is absolutely important!!
This takes time and we all feel like we need to be saved right away or we are going to die.
Recovery is slow and steady.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lymeboy
Unregistered
posted
Just to put it in perspective, I've been treating Babesia hard for over a year. Could be anohter year. I still have plenty of hope that I'll beat it.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been treating Babs for years, but have been on herbals for about a year, and am seeing improvement.
My LLMD had me start an alternative detox program and I am feeling so much better when I finish those treatments. I recently have dropped back from twice weekly to now every other week.
I am also chelating metals. I feel the best I have since I left work 11 years ago.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't have air hunger but from what I read, it's usually from the pathogens not the psychological stuff.
We all have to try the best we can to get well. Some people do & others don't. I don't want to be a naysayer but I've been ill a long time... The treatments didn't work for me.
Don't give up hope. You just have to keep treating with herbs, supplements or drugs & try to live with it as best as you can. I hope you make it through but not everyone gets completely well.
I'm just saying this to be realistic. This is not an easy illness. It's more complicated than what some doctors or the media lead people to believe.
Try to relax because stress doesn't make things easier. Some of the anxiety is physiological. It comes from killig pathogens. they excrete chemicals & they can effect the mind/brain. It happens alot when you try to kill them off.
Keep in mind that it can be from something physical rather than your own thoughts/mind. Meditation helps some. Distraction can help, too - watch a movie or a comedy. Try not to get too caught up in all of it.
I hope you get well quickly!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
The physiology of air hunger can make you feel anxious, as we have less oxygen.
Maybe try some deep, slow breathing and see for yourself if getting more oxygen in helps. As in does five deep breaths help, 10, 15, etc - experiment with it.
And if you find that a certain quantity works, then do this often, since we need as much clearheadedness as we can get to strategize managing.
Posts: 13116 | From San Francisco | Registered: May 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I have fully regained my life and don't look or feel like a sick person any longer. That is saying a lot for someone who was diagnosed with "explosive" rheumatoid arthritis 6 yrs ago.
I am still in treatment but my doctor (LLMD rheumatologist) told me in July that I was nearing the end of treatment and she fully expects to turn my rhuematoid gene expression off which will mean I no longer have RA.
Currently, I only test positive for mycoplasma p, chlamydia p and EBV. So I am on Ketek and Famvir.
You can get well.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I'm so happy to hear this. Good for you! Gives me hope. I haven't treated Bart yet. I'm hoping that makes a big difference. Since my soles and palms are on fire, I'm thinking/hoping Rifampin which I start in a couple of weeks should help. Fingers crossed!
Thanks all for replying.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
My dd is doing really well too. I won't say cured yet, but she is 95% well (which we celebrate every day), and we won't give up until she is 100%.
She treated for a VERY long time, with the last year being on herbals only--
You WILL get well, but patience is definitely learned the hard way in this fight--
HUGS!
Posts: 648 | From northeast | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Actually, your bart symptoms are coming out because you are knocking down the babesia. So, this is a good sign, as far as your babs treatment goes. You really should be treating bartonella, too. After a few months on mepron, my son's bart streaks increased dramatically, an indication that babs was getting knocked back, and bart was coming out more. One infection can keep another one at bay, believe it or not.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
We are both getting better. My husband has had remarkable success with Flagyl and Mepron. Sometimes he is tired but his knee pain is gone, energy is way up and he walks easily. He is a very happy man!
Now I am more difficult (of course I have always heard that!). I had to stop IV Rocephan for a week or so because I was so breathless. Sure enough, breathing became easier. Now I am back on it...along with Biaxin for sinus lung issues. I also take Singular to help my breathing.
I take Resperidone (low dose) occasionally for anxiety and Lamictal daily to prevent mood swings. My meds are reviewed regularly and approved by all three of my docs.
It takes time and patience. I was sick for 20 yrs, bedridden on oxygen. Finally, by chance, we found that heavy abx helped me. I've been on abx for three years, am walking, reading philosophy, painting, and even making sense! My family is delighted and so am I. I"m even starting to look like my old self!
But I still spend way too much time in bed. Its tough to take those abx....wears you out. But it is definitely worth it! I take short walks around my house and outside when I can. You learn to budget your strength and energy.
This was a big learning experience for me. Patience was never ever in my vocabulary before I became ill. Think of it as a learning opportunity and see how you can grow, even when you feel lousy.
Try Milk Thistle to help your liver detox along with lemon water. I tried juicing but overdid it....have to go very slowly.
When all else fails, try hot bubble baths with Epson salts. Does wonders for the body and spirit!
Hang in there. Patience is a virtue I was told years ago. Now I finally get it and so will you!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am 98% better and off abx. I do take LDN though and will for the rest of my life. I also take methyl cycle supplements according to my specific mutations.
A year ago I was asking the same question as you are now. I was depressed I would never recover. I could no longer tolerate the drugs I did not feel were working any more and I was worried I might literally die, or worse yet, develop dementia so severe I had to be put away. This is what I learned.
You have to treat ALL the infections and as soon as you push one down, another one will pop up. It is like that game at the county fair when you bonk toy gophers on their heads with a bat. As the one you bonked goes back down the hole - another one pops up. The trick is figuring out which infection is which so you are taking the right drugs.
The last thing to treat for me was protomyxzoa, which everyone ignores because it requires strict diet control and most people just don't want to follow it - so they say it does not matter. It does.
If you are taking the recommended amounts of fat with the mepron, the protomyxzoa will get much worse because it thrives on lipids. PR also causes many symptoms similar to babesia and bart. It causes anxiety, depression, irritation, air hunger, cough, hoarse voice, congestion, insomnia, joint pain, body pain, nerve pain, twitching, weakness, loss of stamina, profound fatigue. . . .
You could try adding rounds of Coartem into your babesia protocol. It can be very effective. If your symptoms change to become more bart like, and you haven't treated bart, then you could add in Bactrim DS.
If you begin to experience bart like symptoms and you have treated it, then it might be protomyxzoa taking over. In any event I really believe the sooner you go on the low fat vegan diet, the better off you will be.
I resisted it because I didn't want to "throw money away" on the expensive drugs used to treat babesia that are better absorbed with fat. The problem is, you may be absorbing more of the drug, but you are feeding the PR and eventually it will take you down. It multiplies 100 times faster with lipids and arginine.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
nefferdun I'm really confused..So we should not be taking the recommended fat with mepron??
Posts: 1748 | From United States | Registered: Dec 2011
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Maya12
Frequent Contributor (1K+ posts)
Member # 36392
posted
How can you treat babs and do the low fat vegan diet at the same time ?
Posts: 1632 | From Canada | Registered: Feb 2012
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I am better ! I am still treating but my life is full. I am a class mother, co-editor of the school newsletter, I do Sat. Pre K Program. I am also involved with the Junior Women's Club in my town.
PLUS I WORK 5 DAYS A WEEK !! I am a mother of a teenager. I am a cheer / brownie MOM. So yea, we do get better !!
I was in the same boat two years ago. What helped me most is my faith. I have learned to be a patient person. I have learned to smile though the rain. I thank God for healing me everyday.
I know how hard those beginning days are, hang in there. There is definitely light at the end of the tunnel. You have to believe and have faith !!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
It's great to hear from you who have gotten better. Thank you so much for the encouragement!!
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I felt the same way about taking the mepron and malarone with the fat. Only 47% of Mepron is absorbed with the fat, which doubles the absorption, and it costs $1000 a bottle so who in their right mind would want to throw that much money away? I was paying out of pocket for mepron and malarone so I was very reluctant to not take the fat.
I took it with fat. The babesia duncani was brought under control but the protomyxzoa exploded. Would I have absorbed enough atavoquone without the fat to affect the babesia? I don't know.
After a brief recovery, the malarone and other babesia drugs completely quit working. I was exhausted and depressed with profound fatigue, breathlessness, headaches and mental deterioration - - - But I also had Insomnia and muscle twitching, which does not fit in with babesia so I thought not only was the babesia going berserk again, the bart was back too.
It was several months before I figured things out for myself and tested positive for probotmyxzoa. As soon as I started the diet and ivermectin I made huge strides.
Dr. F recommends taking babesia drugs without the fat. I think I would get tested for PR first to see if you are infected and then make a decision about the best course of action.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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