If anybody can lend some logical input, it would so appreaciated.
I have been on treatment a total of almost 14 months. 11 of them on IV rochephin and 8 1/2 on babesia treatment.
Started oxygen a month ago, had my gallbladder taken out at week 2, then was bedridden for 2 weeks..then back to oxygen chamber.
Now, they have found a staph infection (that I have probably had for 6 months or longer) and am awaiting possible IV vancomcyin for it.
I have been taken of the mepron..wich now my sweats, hot flashes and low grade fevers that took around 7 months to go away have come back...in order to start Rifampin to hold off the staph for now.
My question is:
Should I be doing oxygen?
Should'nt I wait and treat the staph infection?
Is'nt this too too much????
I have been super aggressive for 14 months but now am becoming a total vegtable and am asking...were do I draw the line?
I know the chamber is good for my immune system but I feel with surgery, the staph infection and my current state I may not be in a good place to heal.
Please if anybody can help shed some light.
I am herxing bad and or possibly relapsing with babesia so this could just be the bugs talking.
I just feel beat up and like I need a breath.
Anybody?? Thank you
Posted by lightwise (Member # 10661) on :
I felt the need to reply, not because I have a ton of great advice, but that I wanted to say that I feel for your situation. Confusion is sometimes as bad as the actual sickness.
I hope people with more experience than me come to your aid with some advice.
The stuff I have read (and maybe logic) would suggest that your super aggressive approach is not the way to go anymore. In the book "The Top Ten Lyme Disease Treatments" by Rosner, he suggests that the best way to approach treating Lyme is to look at it more like a marathon than a sprint.
He has some interesting information that I found helpful. He talks about ABX (IV and oral) Rife, and other approaches. Maybe this book could help clear up some of your "what next" questions.
I am in the "what next" phase myself. You might also want to look into some herbal remedies like the Buhner protocol or Lee Cowden's protocol.
I wish you relief and some peace.
Posted by heiwalove (Member # 6467) on :
i'm so sorry you're going through this. i know what it feels like, and my thoughts & love are with you.
my advice, though of course i am not a doctor: i honestly think you should back down. you say you've been on the 'big guns' for 14 months and are just getting worse and worse.. this is not a good sign, IMO. i think you need to listen to your body, give yourself a break, be gentle with yourself. what that would look like for you, i have no idea; but perhaps talk to your doctor about backing down on the lyme/coinfections abx, trying gentler, different abx, stopping abx altogether for awhile (other than the abx for the staph infection, of course) and doing something herbal/alternative that you feel comfortable with, focusing solely on detox for a couple months, etc. whatever makes the most sense to you in your gut, in your heart of hearts. if your LLMD isn't willing to help you out with this, then maybe try to find a doctor who will.
just my opinion, and perhaps it's a controversial one on this board, but i truly don't believe you need to suffer through horrible herxes and feel so close to death in order to get better. in fact, in some people i think following such a rough course could do more harm than good in the long run.
sending much love & warmth your way..
hang in there.
Posted by painted turtle (Member # 7801) on :
Hi Jenschasinglyme,
I think that you yourself sound as if your intuition is asking about oxygen right now. And to me, that sounds like maybe you should take a little break from the oxygen because you yourself are questioning it for you.
If I were you, I would focus on the staph infection and clearing that up.
From my own experience, this lyme and coinfections, like said above, for some of us, is indeed more of a marathon than a sprint.
To me it sounds like your body is begging for some balance.
I wouldn't doubt the progress that has been made during these 14 months. What I would do is take care of the staph infection and then reprieve. Allow my body and mind to respond to the medicine for awhile, pick back up on its own and then take it from there to potentially go back to the oxygen.
So, of course I don't know whether you should take a break from oxygen or not right now, medically speaking. What does your doctor/doctors say?
Good luck and best wishes.
Posted by lymebytes (Member # 11830) on :
I would do nothing else except first get rid of that staph infection! My son recently had a resistant strain, Doxy to the rescue! Believe it or not Doxy can kill resitant strains of staph and so can Rifampin.
Hope you feel better soon.
Posted by Doomer (Member # 11013) on :
It sounds like you are dealing with really difficult circumstances.
Your body has just been thru the stress of surgery and is not only trying to fight the LD and babesia but staph as well. Your body needs to be strong and not further compromised by the oxygen at this point.
I would go home and recover and recouperate. When the staph is undercontrol and then the babesia undercontrol (if it ever can be) then perhaps go back to chico and do the oxygen again.
Just my thoughts and I hope you can find the strength to make the right decision for you. I have never done hyperberic oxygen but it sounds like the herx can be severe and perhaps your body is not able to handle that right now with everything that you have faced.
I hope that you can go home and heal.
From one sick Jenn to another sick Jenn
Posted by Vermont_Lymie (Member # 9780) on :
Hi Jen,
It sounds like good advice to consider, above; to do one thing at a time for now while you are hit with the staph and recovering from surgery.
Since the HBOT is away from home, it must be difficult to continue with that while you need to recover from everything else. Perhaps you should focus first on getting rid of the staph, with the rest, support and comfort of home, and then come back to the HBOT a bit later?
What does your doctor say? Sending you good wishes. Hope the rifampin works well.
Posted by CaliforniaLyme (Member # 7136) on :
Jen, if you are not allergic to sulfa drugs I would ask to be put on BACTRIM!!! It is one of the very best treatments for the kind of staph you have- it ALSO treats babs AND it has put many longterm chornic Lymies into full remission!!! Or close!!! It has great efficacy at getting into the head hence it is often used to sinusitis!!!
I am deathly allergic to sulfa drugs but if I wasn't it is the #1 drug I would try if I ever got bad again!!! It is a GREAT drug- it is like an uber-oral- like Flagyl or Zithromax- it is POWERFUL!@!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tetracycline is not good for the kind of staph you have it becomes resistant- !!!! Sincerely, Sarah
Posted by djf2005 (Member # 11449) on :
jen-
i can give you some good, logical advice. call me tomorrow and we can talk about it. i cant even begin to write it all out. if you like, i can help
humbly
derek
Posted by oxygenbabe (Member # 5831) on :
Jen, my two cents is: too many big-gun drugs have weakened your system, wrecked your gallbladder necessitating surgery, and not gotten you better. Your immune system needs to rally.
Knowing what hbot has done for me I of course would suggest doing daily sessions at 1.5 ata not 2.4 ata. 1.5 will gently suppress/kill some lyme without a major herx, and will help the body continue to heal from surgery.
Frankly, some folks can handle all the big gun IV and oral abx and some can't. We have to listen to our bodies. For some, the strain and toxicity is too much and it suppresses immunity.
I also suggested steaming with teatree and other essential oils. It kills staph. It really does. There may be options for treating a staph infection in the ears that does not require IV abx. Farah would know about that, she even treated her lyme with essential oils though it seems to me that is less likely to succeed and she was lucky.
Posted by Jill E. (Member # 9121) on :
Jenn,
You and I chat frequently so you know how sensitive to meds I am compared to you, so I never like to use myself as a typical scenario.
But I must say, Rifampin has been the hardest medication I've been on so far (no, I haven't been on IV Rocephin so I can't compare). Some other patients who are not as sensitive as I am say it's a tough drug.
So I'm just throwing it out there that Rifampin could be adding to your herxes. Rifampin worsened my already scary Bart symptoms - myoclonus, almost seizure-like activity, tremors, twitching, anxiety (at first) and more - for a very long time.
So when you talk to our mutual LLMD, it's just something to consider - that if you are having Bart herxes or Rifampin side effects, it might be another reason to scale down some of the other treatments so as not to overwhelm you.
Please keep us posted. Feel free to call me anytime.
Jill
Posted by djf2005 (Member # 11449) on :
jen-
i agree, youre doing too much at once.
stop, re assess, and listen to your llmd.
does HE not have a course of action for you?
i would listen to him, and if you can not put your faith in his direction, then id suggest a new llmd
Posted by jenschasinglyme (Member # 11193) on :
Thank you everyone for your advice.
My boyfriend who is paying for all this won't "let me" come home.
He said it's not a good plan to come home and just sleep around because he has been taking care of for 14 months, now has lyme too and can't handle it.
He said if I choose to leave that he will send me back to San Diego where I am from and that he won't be able to handle the fact that it will take so long to get better.
He has invested over 12,ooo.oo in expenses for a wonderful classy hotel, nurses and a "custom" Lyme treatment and I should'nt throw it away and that I can't come back. There is no more chances to do it.
My LLMD said go home and everyone has there breaking point.
I asked him to call my boyfriend for me.
I know, this is terrible and I am heartbroke with all that I have been through in the last 30 days with my health.
I am devestated. I am really not given any choice. He told me I should stop the meds then and just treat the staph and just do oxygen. I have to stay and live in this hotel though and that he needs a break.
I have no money and he has been my caregiver for the last 14 months.
I am four hours away from home.
He said he cannot deal with me on so many pain meds and now that he has lyme said he can't get better with me so sick.
He said he will just send from one hotel to another.
He is going to visit in a week or so. Maybe just stop everything, treat the staph and make him take me home when he gets here??
I feel lost and with out any choices.
Thanks for all who haved helped.
Posted by oxygenbabe (Member # 5831) on :
I would 1) Get essential oil of teatree, and boil 1/4 inch of water (buy a hotplate), water boils, turn off water, put 10 drops in, breathe in deeply through nose, then turn head to side and let steam go all the way into one ear then the other. Do this every 20 minutes. Have them re-culture in 3 days. Bet it's gone. 2) Switch to a tolerable abx and keep doing oxygen
Short-term decisions made on emotions are not always wise, I know this myself .
If you can't tough it out though and want to get away, go home to parents, give bf a break. He sounds like he feels like a sinking ship himself. A caregiver for 14 months, paid all this money in good faith and wants you to show good faith too and stick it out. He's afraid with lyme himself he will collapse. He sounds very generous overall and if your family will take you in for a while it could give you both a break. He's not a husband of 40 years after all, he's a boyfriend and has been good to you it sounds like. Nobody's a saint.
Posted by painted turtle (Member # 7801) on :
Jen,
First thing is, no one has any right to demand an expectation that has not arrived yet. Of course we expect to get well
after all this time, and after spending all this money that was paid by someone else (I relate to what you are saying)
But I realized it is not reasonable to place a burden on myself or to think my partner has a right to demand my wellness, even after all this time and money, and I am still not able to work, and am even worse in some ways.
I give up all the time!
So I think the sooner you lift your expectations of what is supposed to have happened and think about how you may not realize that even though you now have a staph infection to focus on, and there are other complications,
It does not mean that the treatment has failed.
And even if you focus on staph and ease up on the rest, it does not mean you stop treatment.
If you stop abx all together, it does not mean you are not treating.
So personally, I don't think your boyfriend should be making medical decisions for you, it should be your doctor, and you.
Mostly, do you know what all your options are as to where you go next?
Posted by CaliforniaLyme (Member # 7136) on :
Wow. In San Diego there is only one LLMD and she is not nearly as capable of giving you the care you are altogther receiving!!! I think staying where you are and continuing to treat gives you your best chance of getting well!!! And gives you your best chance with your relationship, too! I think your honey really cares for you and wants the best for you!!!!!!! It is really hard to see someone you love sick all the time!!!
Praying for you very much!!! Best wishes, Sarah
Posted by jenschasinglyme (Member # 11193) on :
Yes, I know it is hard for him. I don't think it is healthy for me to try to recover from all of this in the middle of nowhere when I have a home, a dog and boyfriend that is suppossed to love me.
I think he sent me away to the oxygen to put space between us so he does'nt have to deal with me sick.
I am going to find my own way home-pay someone to load my stuff and have them drive me.
This is total crap. Leaving me in hotel room rotting it feels like.
It's better for me to recover from the staph before I continue to do all these treatment while in Hyperbaric. My LLMD said go home as well.
What do you guys think? I am not going to stop ALL antibiotics but am surely not going to be crazy about trying to do everything at once.
You can get better without killing yourself.
This is what I feel is better for me.
Thanks for everyone who has given so much too help me.
Jennifer
Posted by BOEJR (Member # 1734) on :
Hi Jennifer,
It sounds to me like you also have way more emotional stress than you can bare right now. It will only serve to increase your lyme...
Try to take a deep breath and then make your decision. Only your spirit knows what is best for you.
I sent you some literature on HBOT now I am sending you a Blessing,
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
.