seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
OK, I'm pretty upset as I was trying to read my young daughter 3-4 children's books tonight. I was reading at a moderate pace. By the time I finished, I was so out of breath and super weak. I still feel terrible. I felt like I can barely lift my arms and I was OK before reading.
It's like I can't get the O2 I need.
I've had normal cardiac tests, normal pulmonary function, clear chest X-rays, CT-scans, etc. WTH is going on? I was my ID doc's office a few days ago telling him about my weakness upon exercise.
They ran a pulse-ox on my finger before having me walk 20 times up and down the hall. Initial % was 97%. I walked, got very lightheaded, weak, off-balance, weak legs...guess what the number was after? 98%. OK, I'm clueless or insane. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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savebabe
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posted
Babesia can give you shortness of breath. Anemia can also do this. Have you been tested for co-infections?
Posts: 1603 | From ny | Registered: Aug 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Ha, same with me and the pulse ox Seek. I am also running out of air. I was talking to my massage therapist while very relaxed (obviously, getting a massage) and I had to pause twice as I did not have the breath left to finish the story.
This happens when I have a conversatio of any length. I limit my speaking to just a few words.
I also come up clear cardiac and my Pulmonary function test today was clear according to the tech aside from some very mild asthema or allergy.
Just want you to know that I have the same thing and nothing to show as for the reason WHY?
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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tick battler
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posted
From what I've read, this symptom is usually from babesia. Are you treating for it?
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I predict that the more you visit the ID doc, the more insane you will feel.
Also, the more you visit a good lyme literate doctor, the more sane you will feel.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Working hard at it TF. I promise!
Feelfit, sorry you're going through this hell ride too.
I'm not really treating for Babesia. LLMD has it on the to-do list 3-4 months out (4 malarone daily). Nurses say Biaxin will fight off Babesia. Not working. lol.
I'm not anemic. I've been tested many, many times.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Yep, that's babs. That is the signature symptom of "air hunger".
The pulse ox won't help you. It only reads the O2 saturation of your blood. It can't tell that many of your red cells are inactivated.
Savebabe is right. Anemia can cause this, but babesia IS essentially anemia.
What is going on, as it was explained by my LLMD, is that you have fewer red cells than you need, because many have been invaded by babesia. Therefore, your O2 uptake is low. Therefore you're out of breath faster than you should be.
Normal blood tests will show you have the normal count of RBC. And the IDMD will think you are crazy.
Did you test positive for babs? Did your IDMD look at your RBC on stained slides to see if you have babs? What is his purpose if not to discover infectious diseases?
I do not understand what they do. They don't seem do anything with infections.
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Seek, try tonic water. It has a small amount of quinine. For me, it cuts down on the air hunger. I still get it once in a while even though I feel good otherwise .... for sure not as bad as I used to. It's not enough to treat it, but it has been enough to make me more comfortable throughout treatment.
Be sure to get it from the health food store or Whole Foods if you don't want the corn syrup.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've been through the same thing.
Tested for babs, came back negative, so he's not treating.
Mine does seem to be getting better, although long speaking periods do tend to bring it on.
Not good for someone studying for the ministry. Can't preach if I can't breathe.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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quote:Originally posted by seekhelp: I'm not really treating for Babesia. LLMD has it on the to-do list 3-4 months out (4 malarone daily). Nurses say Biaxin will fight off Babesia. Not working. lol.
I'm not anemic. I've been tested many, many times.
Seek,
Send your LLMD a fax and tell him the Biaxin is not working and you want to start Malarone. Or have you already done this?
Complaining so much about him and not taking action doesn't work for me.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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cactus
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Member # 7347
posted
Shortness of breath was a problem for me at the beginning of babs treatment.
Not sure if this will help but...
I used an inhaler for about 6 months - daily.
Had never had asthma in my life, so it was a new one on me - but it helped a lot.
After about 6 mos of babs treatment, I no longer needed the inhaler.
And yes - it did have small amounts of steroids. But it was Rx'd by my LLMD, and it helped. Ya gotta breathe.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I think it is Babesia. I have it too. Sometimes are better than others, but just talking in a normal voice at a slow pace can exhaust me.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Are there any indirect blood tests to check for babsesia? Perhaps some sort of red blood cell count, or intracellular test, or anything?
I have the shortness of breath thing too. In fact, it's probably my worst symptom. But to make matters confusing, I also have asthma/allergies. My asthma didn't get bad enough to treat until several years ago, when many of my other weird symptoms started showing up, so it is suspicious...
But my Lyme doc thinks it may just be immune dysregulation from Lyme, hence worsening asthma. Which is possible, but asthma medicines only help me somewhat. I still don't breathe nearly as well as I used to, even when using asthma and allergy meds.
And my babesia tests came back negative. So some indirect testing, even if they are not 100% indicative of babesia, could be useful.
Posts: 584 | From NY | Registered: Feb 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
seekhelp, I agree with the others that it sounds like Babesiosis. I have treated it more than once, and every time I have it I have shortness of breath. When I have Babesiosis, I would not be able to read aloud as long as you did.
Biaxin alone will not eradicate Babesiosis. You need to take an anti-malarial with it.
Make sure your Lyme doctor knows you are experiencing this.
Posts: 4681 | Registered: Oct 2000
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CherylSue
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Member # 13077
posted
Hi Seek,
A year ago I had a blood microscopy done by a naturopath. That doc's protocol was suspect, but the video that I have of my active red blood cells were very telling. It showed babesia and mycoplasma.
I mentioned it to our LLMD, but he didn't put much credence in microscopy. He had wanted me to try the Clindy/Quinine and then Plaquenil, etc. protocol. I refused.
But he did give me malarone over a year ago. I took it for a few days, and was crying day and night.
I started taking it in June and relapsed. Then I began again the end of July.
I've been taking 1 malarone pill a day. I still have fatigue, some malaise, and burning skin.
However, I think I may be doing a bit better. I returned to work 8/20, and I'm hanging in there.
I really think babs was the issue here. I also take it with Ceftin 500Mg BID. I want to make sure my lyme is covered also. At some point I'll add back the Flagyl again.
IMO, treat the babs, too, for a longer period of time - at least 5 months. It's slow going, but I think you will see improvement.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the comments/feedback. Very helpful.
One more thing, I really don't know if I'm going nuts or this is Babesia. Everytime I try to walk any distance (i.e., walk through department store, park, basically any length like a block), I can feel my upper shoulder muscles start to get very tight.
The tension gets so bad, it moves to my neck and then all of a sudden getting a full breath gets hard. I'll start sweating a lot. It feels like someone is constricting lung movement by 50-75%.
It weakens me so badly, my legs feel heavy and I must just stop or most likely collapse. It's like my body says "DONE."
Could this be anxiety? This is killing me trying to figure it out. It's like my muscles aren't getting the oxygen they need and I suffer. I'm a bigger guy too so that plays a part, but I surely should be able to walk these minor distances at a rather slow pace. Many people more out of shape than me at Wal-Mart get around!
I feel hopeless. It feels like being strangled. I went into several greenhouses in early Spring / Summer where it was probably 90-100 degrees and high humidity. All hell broke loose. The problem I described was 10x worse. I felt like I'd die and couldn't function for hours afterwards.
Weather plays a big part in this. Extreme humidity, extreme cold are killers to me.
If this is Babesia, I want treatment NOW. I'm so damn tired of it being pushed to the backburner. It's destroyed my life and I've never had more than 2 malarone pills a day for a year. It's devastating. My initial Babs treatment was 4 pills of Malarone for 3 days a month. I was told it is all I needed...
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I don't know what this is that's happening with me, but with your shoulder/air hunger connection, I need to mention it. I'll mix in what's happening with my theory on why.
I've been seeing a chiropractor for my shoulder pain (it's helping). He told me subluxation can be caused by three things, one of the three is toxins.
So, having my neck adjusted has helped a lot (I can feel it pull in my shoulder when he adjusts my neck). I just started going this past week. All of a sudden today, massive air hunger. As you know, I'm near remission, so have few symptoms except for insomnia and shoulder pain .... sometimes, though not often lately, air hunger.
I was just talking to my husband before I read your post about how I thought maybe babesia was hiding out in this neck/shoulder area because lymph/blood flow through there was more restricted. Which came first, the subluxation or the pathogens/toxins residing there? Who knows?
So, yes, I think your shoulder pain could be related to the air hunger, and both could be triggered by the blood/lymph flow due to moving around.
I'm working on detox to try to move these toxins out ... right after my adjustment I go work out (I know everyone can't do this) to try to keep lymph/blood flow working on this area while it's in proper alignment as it moves back pretty quickly still .... though more slowly each adjustment. I'm drinking tonic water again for the air hunger. I'll use the photons in a couple weeks to get to the infection again.
I took Mepron for 13 months and Malarone/Lariam for 6 or 7 months. I took Artemisia the whole time. Babs is a bear to get rid of .... I thought I had licked mine, and I'm hoping this shoulder area is the last place it's been hiding out.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This is what makes me wonder if so much of our Lyme pain is due to toxins - http://tinyurl.com/l7jc3d
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Six how do you get the tonic water to taste good?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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WildCondor
Unregistered
posted
Make sure you guys stay on the Babesia meds for long enough. Coming off them too soon can make you relapse. Many patients seem to need multiple courses of babesia treatment for that reason. Some docs will only use 2-3 months of treatment for babesia, when it would probably be better at 4-6 months worth. Make sure when you take Mepron/Malarone that you eat a fatty meal with it so it is better absorbed.
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Sammi
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Member # 110
posted
seekhelp, leg weakness is one of my Babesiosis symptoms.
I agree with Wild Condor that Babesiosis needs to be treated aggressively and long enough. Sometimes even with aggressive treatment, retreatment is necessary.
Does your Lyme doctor know about these symptoms and their severity?
Posts: 4681 | Registered: Oct 2000
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yep, told my LLMD every time. Symptom severity doesn't play a huge part in the order of treatment. The approach is kind of methodical IMO. I have treated for Babs with low-dose Clindamycin / Quinine for 20 days.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Pinelady, I like the taste of it and so do my kids. Maybe it's the brand you're buying. I'm using stuff from Whole Foods that has no corn syrup. I like it. Otherwise, you can add a bit of lime (olives and tequila would be good too, )
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Six in my Lymebrain I hadn't thought of that. LOL I got mine at the liquor dept. in walmt. LOL
I do hope you caught that.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Eww, I bet Walmart brand is pretty nasty! LOL!!
I prefer Fever Tree, but with the demand on their tonic water, Whole Foods can't even get it in anymore! I guess all us Lymies are drinking it and they can't keep up! So, I've been drinking 365 brand in cans ..... my kids always want some and say it tastes like Sprite. Probably has very little quinine in it, but seems to take the air hunger away for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I know exactly what you mean. 98% oxygen level measured in MDs office and I'm sitting there struggling to breath with terrible chest pressure. Also shoulder, neck, and chest pain.
I really want to try the tonic water. Does anyone know if it should not be mixed with any medicines? I've got to try something.
Posts: 237 | From WV | Registered: Mar 2007
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posted
I never thought of it before because I don't have air hunger all the time but I have gone through periods where I was out of breath talking...or just walking a short distance.
Sometimes it is so bad I have to sit down to catch my breath. But it comes and goes...
I used to go to the gym all the time but these past 3 months I just don't have the energy most of the time.
Yesterday I walked up the stairs and was immediately lightheaded and out of breath.
Is this what you mean by air hunger?
Also is a symptom of Babs night sweats? The weird thing is I haven't had a night sweat in probaby 8 months but there was a period of maybe 4-5 months that I would wake up drenched...but it wasn't consistent. I'm talking maybe 2/month...nothing major.
I have always wondered what that was.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
TxLymie, shortness of breath and night sweats are two hallmark symptoms of Babesiosis. Are you being treted for it?
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