posted
Yet another treatment I can't seem to handle. My llnd placed me on supplemental oxygen, thinks I have some carbon monoxide issues that are making me sensitive to everything(sound, light, taste, vibrations, chemical, energy medicine, you name it).
I tried it for 45 min. and got an increase in my heart rate, frequent irregular heart beats, and halted(not smooth) breathing. I barely slept last night. I still feel it, but less, and it's been 15 hours.
i was on 5 liters, I know I could decrease it, but right now I'm, afraid to have any at all. Plus it's costing me $325 a month to rent it.
Why am I reacting like this? Thanks for any input.
dogmom
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
posted
Could it be a herx? I know that Lyme does not like oxygen.
I really feel for you because I seem to be the same way with treatment. I am SOOO sensitive to everything. It seems like every time I do have a reaction or herx it comes in the form of heart issues which is something I can't just push through.
It is so frustrating because I wonder how I will ever get well if I can't tolerate enough of anything to kill this stuff off.
Anyhow...just wanted to say that I am so sorry and that I can definitely relate.
I hope you find something that works for you!!
Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
| IP: Logged |
posted
Wow 5 liters is way too much. My sleep doc put me on 1-2 m at night...That's it. I don't think 5 m is very safe from what I,ve been through.
I know some people do oxygen therapy at 4-5 m for 1-2 hrs a day but that's it. Do you have any apnea issues? Then you must go to a sleep specialist as they are the only ones who know how to do that by having a sleep study and such.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
posted
pam, sorry you can relate, but thanks for the support. After being diagnosed with ms I thought even if they discover a cure(which would be great, of course) it wouldn't cure me because I couldn't tolerate it.
Do you think it could be a herx if there was no chills/fever, just the cardio/breathing stuff? I had a similar thing happen a few months ago when I went on a super clean diet for a few days, go figure...
sk8ter, the scrip was for 5L 2 hours a day. I have no sleep apnea.
i e-mailed my llnd yesterday,haven't heard back yet. I 'll be disappointed if I don't hear back before the weekend. Need to know if I should return this thing, or try a much lighter dose/less time.
Thanks for your replys
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
posted
Can you try for a shorter time and titrate up from there? I too am sensitive to a lot. I sneak up on my body ...LOL
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
quote:Originally posted by dogmom2: [QB] Do you think it could be a herx if there was no chills/fever, just the cardio/breathing stuff? I had a similar thing happen a few months ago when I went on a super clean diet for a few days, go figure...
YES! A herx is an intensification of any usual Lyme symptom, or the emergence of any new (to you) Lyme symptom.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Quote: "I have some carbon monoxide issues that are making me sensitive to everything"
HUH? Wha...?? CO is an issue of the environment around you. It is Not the product of any abnormal respiration or anything. Nor does a CO level buildup in the body (blood) cause "sensitivity" to "everything". It causes fatigue lightheadedness, confusion, sleepyness... well, you get the picture.
If you need O2 supplementation, your lungs aren't working as well as they should... or you have a red blood cell "issue".. which BTW, can be caused by certain co-infections.
If your LLMD put you on "supplemental oxygen", I HOPE he didn't think that would fight the Lyme. Doesn't work that way. (I WISH it was that easy!)
You need to be in a hyperbaric oxygen chamber- to substantially increase the O2 levels in the body Tissues. THAT is what's believed to stress out the 'ketes... and make them more susceptible to the antbibiotics. Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
posted
yeah, not sure what to make of the whole carbon monoxide thing, what can I do?, I paid over $500 to get an experts advice and I followed it. Not sure what else to do.
He wasn't trying to treat the lyme yet, said that babesia is dominant now, just trying to decrease my sensitivities so I can tolerate the babesia, then lyme, treatment.
It would have been nice to get an answer to the e-mail I sent him yesterday to see what his thoughts are now. Meanwhile I'm paying for this thing I'm not sure I should be using(and I'm not right now)
thanks, dogmom
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It does sound like a herx, unless it's is just because you react to things so much. I agree: 5 liters is a lot, esp if you are starting out and you are sensitive.
I do 10 liters, but I have worked up to that, and, although I am sensitive to certain things, I'm not sensitive to everything.
Why don't you call him? Or email him again. Also, if you continue with it, and you are paying out-of-pocket (I assume you don't have insurance?), you should bargain with the company for a lower price.
My insurance covers the oxygen concentrator, but it's in-network, and although the company bills much higher, the
insurance only pay about $138 per month. If you do have insurance, they should pay, and you would need a company that is in-network. If you continue, that is.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
rumigirl, why did your md prescribe the oxygen? Did it help you? Mine did for supposed carbon monoxide issues. My insurance won't cover unless it is for breathing problems(i guess babesia symptoms don't count)
I guess i'll have to email the llmd again, I'm a little upset that he didn't answer before since it's cardiac issues, seems important enough to warrant a response. I've only seen him once so don't know him very well.
Still have increased heart rate/rhythm issues so wouldn't think of trying a lower dose until that calms down, maybe i'll have to return it for now.
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My mom was on oxygen for the last two years of her life and 5 liters is WAY too high to begin with.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
Unusual reactions can be herxes or could be something else .. you should talk to him.. find out if the normal population would experience the symptoms you had , if not then it could be a herx.
best to consult with him and arrive at appropriate treatment.. don't give up just because of one bad episode.
Posts: 107 | From new jersey | Registered: Dec 2009
| IP: Logged |
posted
For me the best way to treat the Babesia induced sensitivities was to treat the Babesia. Bactrim, Artemisinin, Doxycycline, Levaquin are all helping in that regard (my Babs treatment is non traditional and may/may not work) Did you have your carboxyhemoglobin assessed? Lyme and Co's are microaerophilic and that is why some have benefited from HBOT (hyperbaric Oxygen).
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
| IP: Logged |
posted
Finally got an e-mail back, said sometimes the body can react with free radicals causing a detox reaction, not entirely sure what that means. He suggested i decrease to 1-2 liters, and see how it goes.
I didn't know there was a test for carboxyhemoglobin. He had me do a repeat cd57 and homocysteine levels, I wish he would have included that one too. I would have asked for it if I'd known. Why spend $325 without knowing specifically there is a problem, when there is a test for it?
I feel like I should ask for the test via e-mail now. I struggle with not wanting to be a difficult patient, you know, questioning his treatment advice. Anyone else feel that way? It's like I don't want to alienate someone who is trying to help me. But I also want to say, why didn't you order this test for me?
Maybe this is from so many years of seeing docs who didn't believe me.
Thanks for all the support, dogmom
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
posted
I was on low maintenance O2 24/7 for years. It simply helped me breathe a bit easier.
Once again I am finding myself air hungry, but I think it is from blood pressure problems and can be fixed with the right meds.
The O2 also helped me with the migraines. I felt it was worth it.
-------------------- 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic