posted
As many of you know, I've reduced the antibiotics and anti-malarials and have been switching over to herbs as I'm pretty much symptom-free. I'm not completely off abx and we are not stopping treatment, we're just not being as aggressive since I'm about 95-100%.
I have an appt. on Tuesday and will discuss with my LLMD my problem with air hunger. It has come back recently and is my only symptom.
I don't know what we'll do about it. I take Lariam once every five days. I started back on Artemisia on my own last week.
Any experiences/comments? I'd like to know how you have handled this problem in the absence of other symptoms or what your opinion is. I think it's pretty clear it's babesia-related. I was aggressively treated for babs for a little over a year.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Believe it or not, I got relief from my air hunger
When I started florinef for POTs.
Not to say I don't have babesia and have air hunger return in the last
Few weeks, but the postural orthostatic tachycardia thing
Really increased my shortness of breath/air hunger issue.
Have you searched Riamet or heparin?
Aren't these two alternative treatments for babs?
I am on mepron (first time) with biaxin.
Did malarone/zith for three months twice now.
Definite increase in air hunger, night sweats, etc. with mepron.
I hate this symptom. It is my most concerning/bothersome.
I am sure there are many more experienced here with more suggestions.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi,
Air hunger was a very severe symptom of mine, not only at one time did I start off with Air Hunger, but by the 2nd month off Antibiotic lyme treatment, I started to get
severe, severe dryness that spread from my nose and mouth, right into my lungs within one month, like a sgjrodens syndrome, it was severe, and I
believe I would not be writing this had I not gone back on antibiotics, which at that time was Azithromycin and Flagyl.
For myself, air hunger has gotten better with lyme antibiotic treatment, I did not have Babesia I dont think cause air hunger, however, I think that lyme could have been
very severe in bringing down my Immune system, so that Babesia got worse?
I am not sure,
I would def be careful, EMF sensitivity involved Babesia for me, and for myself, both Babesia and lyme need to be treated to get the air hunger better, they both lower my immune I think,
AND what also might be of interest to you is that the air hunger started on the 28 day growth cycle of lyme treatment,
I also though had the air hunger worse everyday at one time, unless I took the antibiotics for lyme, so this is tough to figure out.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I don't know anything about air hunger. Gee, thank goodness.
I do know that most of the time patients and even LLMDs stop being agressive too soon. I think the aggression against Lyme has to be longer rather than shorter.
In fact, one LLMD cured me - yep, said I didn't need to come back. But he said 25% of my immune system was still not working, but that would come back in time.
I found another doctor - quick. That was 2 years ago, and I'm very nearly in remission - but not yet.
Be careful - Lyme will always be aggressive - we should be also.
Posts: 108 | From Florida | Registered: Sep 2005
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posted
Thank you both for your suggestions. In my reading, I also found thyroid/shortness of breath connections. We have been adjusting my thyroid treatment, so that could be playing a role.
What is so puzzling to me is that I really am having no symptoms other than the air hunger .... so, Geneal, I think I might need to research POTS a bit.
I have started taking Serrapeptase, which I think does a similar thing to Heparin. Could that be making my air hunger worse, do you think?
Trish, abx treatment got rid of my air hunger, too. It also got rid of my night sweats. I do not have night sweats now, which is what's making me think it could be something other than babesia.
Paula, thank you for your comments. We have been aggressive, and I'm mostly symptom-free (the only symptom I've had recently is this air hunger).
My LLMD was thinking that many of my remaining symptoms were due to thyroid/adrenal issues, and when we addressed them, I did seem to get rid of my remaining symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Six, Air hunger has been a symptom that has bothered me off and on for many years. Via muscle testing I would find that invariably, increasing acetyl choline would relieve it for me.
I do think that several things cause air hunger for me. I have the tachycardia (POTS) and orthostatic hypotension. Many who have that (me included) have a low red blood cell mass. Red blood cells carry oxygen to the rest of your body. I'm not really sure of the exact mechanism but I think this *could* be one cause in my non-professional view.
Increasing die off (herxing) will bring it on for me too. I wonder if your recent change to herbs could be causing more die-off? The borrelia toxin and possibly other toxins affect acetylcholine. If I take supplements to increase acetylcholine, it can completely relieve that symptom for me. I often take choline and I added huperzine A at one time due to air hunger.
Babesia does cause shortness of breath as you know. I was treated for babs and my air hunger is better but not gone. I may need more treatment. I'm not sure at this point.
I've had diarrhea for several months and finally decided that it wasn't going away on it's own so I muscle tested that I needed olive leaf extract to fix it. The diarrhea left from the first dose on (whew!!) but I do think that Olive leaf extract is killing something because my air hunger came back with a vengence. I did more muscle testing and adjustments and it is mostly gone now.
edited to add: oh yeah, adding thyroid meds immediately caused air hunger for me. At the time I was adding them, I was coming down with a cold. I told my LLMD and he seemed to think it was the cold but after what you said six, it sounds like it might have been the thyroid meds. Colds don't usually cause air hunger in me so my guess is that it is the thyroid meds. I am waiting to go back on them until I get through my course of olive leaf extract.
I feel for you, it is an awful symptom. I hope you get it under control.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry, that's interesting .... I recently started something with olive leaf extract in it. Also interesting about the thryoid meds causing it for you, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi Six!
There is a VERY good site on Thyroid that I posted here awhile back. It describes how to check your basal temp, and there's lots of good info about symptoms and treatment.
Supplemental iodine may help if your function is low. Otherwise, armour thyroid is safer than synthetics.... have a look:
posted
Thanks, Johnny. I take my basal temps most mornings and they have gotten into a good range. They used to be low.
I was on Armour but it wasn't helping enough, so my LLMD put me on synthroid and cytomel. I'm going to be sure to ask about the thyroid issue on Tuesday.
Thanks again.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This has also been my major symptom. It's frustrating, because overall I feel that if I could get this one symptom resolved I'd be at 99%. But since I can't I feel like I just can't do everything I need to do. I'm tired of feeling as though my blood is just not oxygenated enough.
Terry--thanks for the link to that great article! Can you be a little more specific about your choline supplementation? This is something I'd really like to try.
Geneal--can you tell us a little bit more about florinef? I don't think I have POTs, just an overall feeling of needing more air.
I'm starting Zith/Ceftin tomorrow. I'm scared to start, scared not too. The thought of this symptom getting worse scares the heck out of me, the thought of it never getting any better scares me even more.
Grrr....
***Edit*** Would Alpha Lipoic Acid and Acetyl L Carnitine help with choline supplementation?
Posts: 237 | From Rhode Island | Registered: Jan 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Niere
quote: Terry--thanks for the link to that great article! Can you be a little more specific about your choline supplementation?
You are welcome! I'm glad you found it useful. The article lists a number of supplements that will help increase acetylcholine.
Remember that my supplements are based on muscle testing for ME. You may need something entirely different. I put forth my theory based on my experience which may not work for others and/or may not be the reason behind why acetylcholine pre-cursers stop my air hunger.
I take 300 mg choline, Phosphatidyl choline 420 mg 2X per day, huperzine A 200 mcg 1X per day. At one point I had to add seriphos for adrenal balancing. I was already taking inositol 500 mg per day.
I'll throw my 2 cents in about florinef. I gained a HUGE amount of weight in a very short period of time that never went away. In short, I could not take it at all because it caused massive fluid retention in me. That said, I have a fluid retention problem already but then so do some others with lyme.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks Terry and JB! I'm going to hold off on taking anything until I see how I react on my new medication--I just took my first dose of Zith and Ceftin...
...crossing fingers...Posts: 237 | From Rhode Island | Registered: Jan 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Interesting to note that olive leaf extract *may* treat babs. It has been used for centuries for malaria. Lots of anectdotal reports, no studies that I could find in a quick search.
http://www.drugs.com/npp/olive-leaf.html History The olive tree was cultivated in Crete, where the leaves were used to clean wounds, as early as 3,500 BC. Symbolically, the olive branch symbolizes peace. The leaves were worn by athletes in ancient Olympic Games. In the 1800s, the plant was used to treat malaria. 2 , 3 , 4 , 5
Lots of other reports of use for malaria but you would think that if it were effective someone would jump on it given that malaria is such a horrific problem.
Anyway, I mention this because now I'm wondering if the olive leaf didn't cause or contribute to air hunger due to a possible relationship to babs??
Keep in mind, this is all speculation on my part.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I had this and I had to go back on the Biaxin.
Darnit!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I heard from my LLMD tonight. He's starting me back on Malarone. For three days I'll take four per day, then reduce it to one per day.
I had a night sweat last night, pretty drenching, so it's pretty clear it's the babs.
I don't feel bad AT ALL though! So, I'm still pleased. I actually overall feel better than I did six weeks ago.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Six, keep us posted.
Did he have any thoughts on why the babs came "back" after your hardcord treatment?
It's strange, it seems that some people can clear this parasite with a few months of treatment, and then others (more and more on this board, it seems) take months to years (2 years for CaliforniaLyme).
What is the reason for that, anyone know?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Well, I actually think he was ready for this. About 6 weeks ago, I was on 1 Malarone per day, artemisia, and Lariam once every five days.
I was feeling so good, he wanted to try something a bit different. It seemed that the things I was responding to best were detox oriented, so he wanted to up the detox, and lower the meds. I was still on Lariam, but dropped the Malarone and Art. He also mentioned at that time that I'd start taking the Cowden herb when it comes out. So, I definitely was not pronounced "cured" from babesia.
I actually still feel GREAT! I FEEL better than I did six weeks ago. Though the air hunger has gotten worse every day. Two nights ago I had a drenching sweat. But when my daughter was home last weekend, I lifted weights with her, then played basketball with my son, then beat my daughter in racquetball! (she's 19). That night we went out to dinner .... got up the next day and more of the same!
So, I think we're on the right track ... we're bound to have to adjust things as we go along.
What is puzzling me, and what someone might know the answer to is, why is it JUST the babs???? I have NO lyme symptoms AT ALL.
I have no idea why this is taking so long .... other than the fact that I was exposed to Lyme/babs/bart over 35 years ago. I guess the real question is, why am I better except for the babs?
We are all so warped with our high doses of all these meds, LOL, that I'm wondering, will one Malarone, artemisia, and lariam get rid of babs? Or is it more of a maintenance dose?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Here's an update .... there is no question that this loading dose of 4 Malarone per day is causing a herx, so no question, my LLMD was right, this was caused by the babs.
Hopefully, I'll be back to where I was in a couple days.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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