timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I began treatment for Lyme disease in the spring of 2005. I was very ill with multi-systemic problems, cognitive difficulties and extreme fatigue.
6 1/2 months of IV rocephin and oral antibiotics taken concurrently brought me back to the land of the living, and improved my fatigue. My Lyme symptoms were lessening substantially.
The picc line was pulled December 20, 2005 due to a fungal infection in the picc line. Oral antibiotics were also stopped. I was feeling the best I had in two years, but the doctor on call was concerned I might have a fungal infection, so I was put on voraconazole, a drug for serious fungal infections.
Six days after starting that drug, I got diarrhea, which turned out to be C. difficile. Three weeks after discontinuing the antibiotics all of my Lyme symptoms came back full force, hitting me like a freight train. That was discouraging.
Since it appeared that the C. difficile had been eradicated, I was started on IM bicillin. Unfortunately, the C. difficile came back and stayed for 11 months. (Eventually it was eradicated by Rifaximin).
The IM bicillin in and of itself, was not enough to combat the Lyme. Due to the ongoing C. difficile, I could not take oral antibiotics, so my LLMD suggested HBOT (hyperbaric oxygen therapy) as a possible way to combat the Lyme. He said it may help but it is not a panacea.
I had few options, so I tried it.
I started HBOT on September 18, 2006. I did 40 dives total, at 2.4 ATA for 90 minutes, with a 10 minute air break in the middle of the 90 minutes. I did 4 dives a week, for 10 weeks, since the closest chamber was 2 1/2 hours drive from my home.
It seemed that on Mondays, after the dives, I would go into what my dive buddy (who also has lyme) called a ``hyperbaric coma.'' I literally couldn't move off the bed for 1-2 hours after the dive. This didn't happen every day of the week, but seemed to be a Monday occurrence.
Twelve days after starting the dives, on the 30th I had a definite herx. Headache, chills, fatigue, right knee pain, backache, and right shoulder pain. It was hard to stand up. I was encouraged by the herx that perhaps the HBOT was killing off the lyme bacteria.
Within 4 weeks, my vision went from 20/15 to 20/60. This was quite a change for me, and required glasses so I could read the street signs in the town that I was driving in. The vision change added to my feeling of spaciness that the dives created in me.
Just once, in week 7, did I break out in a hive type rash after the dive. My friend that I dove with breaks out in the same rash after every dive!! She was elated that I had joined the ``rash club.''
During week 8, I got intense neuromuscular pain and a creaky neck. During week 9, I actually started missing steps while walking on level ground and got ``jello'' arms and legs.
I told my friend either the dives were working and that is why I felt so awful, or they weren't working at all and the Lyme was getting out of control.
I had read on various hyperbaric sites that one can feel awful the whole times the dives are going on, and better once they ended. I was hoping that would be the case for me.
About 5 days after the dives ended, I started to have more energy and less fatigue. Life was no longer a chore to get through. I had some enthusiasm again. I could go to a store because I wanted to and had the energy to do so, not because my family was totally out of food.
I was better for sure in the energy department. In January I took 2 trips to NY...back to back. There is no way in the world I could have done that prior to HBOT.
The HBOT did NOT decrease my Lyme symptoms, except the fatigue. I still had some brain fog, a feeling of disconnectedness from my body, muscle twitches, nerve pain, head pressures, etc. BUT....having the fatigue lessened was well worth doing the dives.
In January, on the 29th and 30th, I did 2 more dives. I wanted to see if I would get a herx from 2 dives. I did. On February 9th (yesterday) I started the day with energy, but quickly fell apart. I got an excruciating headache, followed by extreme fatigue ( I was in bed for 3 hours), had chills, nausea and felt sick. I was out of commission from noon on. I am amazed that my herxes are so consistent timing wise in me. I ALWAYS get hit on day 10, 11 or 12 after starting antibiotics or in this case HBOT.
I am encouraged that HBOT is still killing off the spirochetes in me. I will continue to do some dives. What I don't know is how many or how often. For now, I will probably do 2 dives next week....that will be 2 dives every two weeks. I don't know if 1 dive would give me a herx. I may experiment and see. I don't know if it is best to do dives every 2 weeks or every 3. Or 1 a week. I do know that HBOT seems to kill off lyme in me. I can't do another 40 dives in a row. Nor do I want to. But, I think it is important to keep hitting the lyme in this way. Obviously the HBOT is killing off the lyme in a way that the bicillin that I'm on is not.
My vision ALMOST went back to 20/15 eight weeks after I finished the dives. Technically it was 20/15 as measured by my eye doctor, but I could tell that things in the distance were blurrier than before. After doing 2 dives, it is changing significantly again. I don't want it to change too much from where it is now, so that will play into the equation of how many dives I do how often.
I will keep you posted, but I wanted to let you know how my dives did and did not help me. Overall, I found them worth doing. It's great to have some enthusiasm for life again. Many thanks to Julia for giving me advice during my HBOT experience. You're a gem!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Timaca, close your eyes during the dives. You should probably do 3-4 months of daily dives, then you could theoretically drop to 2 a week. This should probably be done while on something like bicillin, like Julia did.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
jif (the OTHER julia)
Posts: 208 | From Santa Fe | Registered: May 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Oxygenbabe~ My eyes were closed for the majority of the time during the last two dives. And that is mainly because I simply can't sit up during the dives. I HAVE to lie down. It's just what happens to me. I am on IM bicillin.
Jif~ You are welcome.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
That's good, Timaca. If I were doing my deep dives again I'd add in the Schardt protocol of diflucan/penicillin, but I'd substitute bicillin shots during the penicillin part.
You might consider adding in diflucan daily during the dives and see what happens.
Just a thought--
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Could you tell me where you are going for these treatments? Are you staying close to home or do you have to stay at a hotel away from home?
I really appreciate your info. I have been advised to have HBO treatment also. I am waiting to have one more consultation. I have osteomyolitis of the jaw as well as lyme, so insurance should cover the majority of the treatments. I want to make sure who ever is treating me is familiar with my situation.
Debbie
Posts: 54 | From Clovis, California | Registered: Nov 2006
| IP: Logged |
posted
If you're doing your HBO dives next week in Chico, say hello to Nikki. She's doing next week at the 10:30am sessions.
We appreciate your outline of your experience with HBO. We're building a website so that Nikki can document her experiences also.
We'll let everyone know the website URL when it's been published.
Lyme Family
Posts: 1 | From Closer than you think | Registered: Feb 2007
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Oxygenbabe~ Thanks for your suggestion. However due to my extended bout of C. diff, all my doctors are being extremely careful about what goes in my mouth medicine wise. I will be starting oral antibiotics soon, but at a dose of 50 mg minocycline once a WEEK. And I can increase it slowly (emphasis on the slowly) from there....depending on my GI tolerance. I'm sure Diflucan would not be allowed on a daily basis, as they are trying to keep the flora of my GI tract as healthy as possible.
Debbie~ I was doing the hyperbaric dives in a freestanding clinic (not a hospital) that was a 2 1/2 hour drive from my home (one way). When I was doing 4 dives a week, I spent two nights away from home. I'd drive to the clinic on Monday, do a dive, spend Monday night in a hotel, dive on Tuesday and drive home. I'd spend Wednesday at home, then drive to the clinic on Thursday, do a dive, spend Thursday night in a hotel, do a dive on Friday and then drive home. I did the majority of this with a friend, so hotel costs and gas were shared expenses. It was difficult to be away from home for half my week, but my family was very supportive. I would not want to do that again, but I'm glad I did it the first time, for I have seen significant improvement.
The dives that I'm doing now I drive to and from the clinic in the same day (which makes for a long day). If I knew for sure that one dive would cause a herx, that sure would be nice....for then I'd do one dive every week or two instead of two dives. I'll have to experiment and see what ends up working both herx wise and time wise for me.
I think what makes it hard for people to do hyperbaric is the time commitment. It's 2 hours minimum, and that is if the chamber is in your hometown. It's a greater commitment if there is no chamber nearby.
Cost is also an issue for most. The dives cost me $125 per dive. I doubt the insurance will cover this as it is considered "experimental" for lyme. It should be covered for you, though, Debbie due to your jaw issue.
I was very comfortable with the staff that did my care. The guy has been running a chamber for a long time. He was even kind enough to put a porta potty in the chamber if my C. diff caused an issue. Fortunately, it never did!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
dlhlyme~ yes, keep us posted about your dive experience too! I do my dives at Scottsdale Hyperbaric Clinic in AZ.
M.H. from Chico Hyperbarics was kind enough to talk to my friend and I twice about HBOT and lyme. He's a great guy!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Timaca, if you have become so sensitive to antibiotics, and there is at least suggestive evidence (only suggestive) that diflucan may inhibit borrelia, and besides you'd kill some yeast, you might as well *ask* your doctors. If you are limited in the dives you can do, you might as well maximize their killing effect. Consider the possibility that oxygen may suppress the spirochetes, and diflucan may also weaken them. I'm not sure if Schardt's hypothesis is true or if something else is happening--for instance, that borrelia is bioengineered to shed mycotoxins that make some of us very ill because of our genetics, and then render us anergic or vulnerable to fungus, which gets even worse on antibiotic therapy, and that diflucan may take care of all THAT, which could explain why some chronic lymies respond to diflucan and some don't (if it's more than just a response to yeast, which is probable).
Sorry to blather on like that but why don't you *ask* your doctors. Diflucan is not an antibiotic and as far as I know will not trigger c. dificile.
Once a week dives, well that's what I do at home as maintenance, but I have to say, the cases that I heard went into remission from hyperbaric alone did 3-6 months of daily dives, and then twice a week for another YEAR.
WIth heavy antibiotic therapy added in, shorter bursts of hyperbaric have sometimes really helped people, and in younger folks, sometimes led to a clinical 'cure'.
If you're going to all the trouble, you might as well maximize it. When I did my deep dives nobody knew about the Schardt protocol. I also didn't know how effective bicillin is (I'm surprised it isn't used more often instead of IV) but I've heard enough personal stories to know it really is quite effective in lyme. Plus it spares the gut.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Timaca, with regard to how many "maintance sessions you will need depends on your system.
I have people that come in once every other week and others that come in once every other month or so. But for now it may be a good idea to do once or twice a week due to your c dif..
Remember that after your initial forty sessions you will need so time for your body to release endotoxins. That may take weeks so it is also a good idea to detoxify as much as possible : ) you know that drill.
Always happy to be of help. BTW, I have been able to get a hotel to offer a rate of $59.00 a nite. it's not around the corner from me but it does offer kitchnette facilities, Most lymies need the Fridge : ).
I am always glad to be of help, if you are thinking of HBOT in Ca then you might also consider Susan Rodriguez at Rapid Recovery Hyperbarics.
Blessings to all, Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Oxygenbabe~ Your diflucan suggestion is intriguing, but not something I will pursue at this point in time. Diflucan is an antifungal drug, so it kills off fungus (including yeast) in the body. I believe it was the voraconazole (a drug for serious fungal infections) that triggered the C. difficile in me. Prior to that drug, I had a perfect GI tract that withstood 300 mg doxy and 200 mg elemental iron without any problems.
What likely happened was my GI tract was somewhat compromised by all the doxy. Then it was hit by the voraconazole, which wiped out all the fungus in my GI tract and I was thus in trouble with C. diff.
Now, Diflucan is not as strong as a drug as voraconazole, but it can still alter the GI tract flora, and cause issues. See the excerpt from www.epocrates.com (a great drug website)
I recently tried one dose of Malarone, which had me up all night with severe abdominal cramping. So...that is why we are being careful. I will keep Diflucan in the back of my mind for use in the future, but not now.
Even with the minocycline which I hope to start next week, if tolerated....I plan on asking the doctor about working up to 3 days on, 4 off. We'll see....trial and error for sure. I am just greatful that the C. diff has been gone for 81 days!
Unfortunately, the bicillin was not as effective in me as the IV rocepin and doxy combined. I am still on it though, for it did give me a herx that put me in the ER with tachycardia, so I know it does something! Just not enough.
I appreciate your input and Julia's as well. Thanks to you both.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hmmm. Are you sure diflucan caused c, difficile? I have never heard of that, as it is antibiotic caused, and I just googled that and found not one reference.
Well, you will do what you must. I just know that without concomitant therapy, the amount of hbot you're doing is probably not enough, and when people stop, they tend to slowly relapse. They either need to do a lot of deep dives longterm, and/or keep doing them as maintenance, or in conjunction with something like bicillin, like julia did. Good luck!
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Oxygenbabe~
Sorry for the confusion...my post states that I believe it was the combination of the voraconazole (which is a drug for serious fungal infections) coupled with my compromised GI tract (due to the doxy) that likely caused the C. diff. Anti-fungal drugs can cause C. diff...although not as often as antibiotics. The combination of the 2 in me is likely what did me in. Diflucan had nothing to do with it, as I wasn't on it.
I am on IM bicillin now...so hopefully that will help with the HBOT.
Thanks for your thoughts.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
From the Mayo Clinic website on C. difficile:
Almost any antibiotic can cause harmful bacteria to proliferate in the intestine, but ampicillin, amoxicillin, clindamycin, fluoroquinolones and cephalosporins are most often implicated in C. difficile infections. The use of broad-spectrum drugs that target a wide range of bacteria and the taking of antibiotics for a prolonged period increase the chance of infection. Other antimicrobials, including antiviral and antifungal drugs, and chemotherapy medications also can lead to an increased risk of infection with C. difficile.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi all~ Thought I would add an update. I did 2 more hyperbaric dives Feb 15th and 16th. On the 18th I got quite "fluish" with headache, chills, nausea, fatigue, sore back and neck muscles, stomach pain and hypersensitivity (it hurt to move or sit on things).
I had a hard time believing it was a herx, for I have ALWAYS (and I mean always) had a herx on day 10, 11 or 12 (and this was day 3). However, I know that herxes can occur anytime within the first 2 weeks....
The next day (yesterday) I had a bad headache for most of the day, but otherwise felt better than the day before. I could begin to eat, and I wasn't chilled, even though it was snowing and generally a colder day.
Today the heater was out in our home and it was COLD, but I didn't have the chills, and (apart from having lyme) feel fine....totally recovered from the herx on Sunday.
SO...looks like another herx to some additional hbot treatments. Next time, I might just try one dive and see what it brings....I can't BELIEVE I was hit so hard!! It sure seems like HBOT kills off the Bb!
Take care....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Here's my feeling on the question of whether it's a herx or not..
If it IS a herx, then you have an enormous population of gram negative bacteria in your body. With the way I understand Lyme (and some other gram negavtive bacteria) it's difficult to beleive your symptoms can be a herx this often for this long. I don't mean to be argumentative - but USUALLY for herx to occur, the die off has to be substantial.. so after the first big one.. symptoms aren't as profound- then are negligable.
You may want to review them - then decide how to differentiate from the Bends and what you're calling a herx...
respectfully, Barb
Posts: 1875 | From VT | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
bpeck~ I'm not experiencing the bends because that occurs while scuba diving when one breathes a mix of nitrogen and oxygen. I breathe 100% oxygen in the chamber. Read over what your link states...it's talking about nitrogen.
Actually, I believe what I experienced was a herx. The following went to a well known doctor on the east coast recently...it's a summary of my herxes...and I am amazingly consistent with them...(or at least I used to be until I got hit on day 3 with this one! ) Timaca
I continued to worsen with weird symptoms. About 6 weeks after the steroid shot, I had knee surgery on my right knee. I was given IV vancomycin during the surgery. Twelve days later, I got very ill...severe full body nerve pain, very sick, very off balance, etc. This lasted for 5 days. I ended up being evaluated by many doctors including the specialists at Mayo Clinic and no one could identify what was wrong with me. No one recognized the J-H reaction that had occurred. I continued to fall apart.
By God's grace, I eventually stumbled across the possibility of Lyme Disease and ended up at Columbia University Medical Center (1 1/2 years after becoming ill).
Follows is what happened to me with various antibiotics. I knew little about Lyme disease at the time. I sure didn't know about herxheimer reactions. As I was given more antibiotics, a pattern emerged...specifically on day 10, 11 or 12 after getting an antibiotic, I have a significant problem of some kind.
May 4th I was given several shots of IM antibiotics. As you can see on the 14th (10 days later) I have a BD (bad day). I literally couldn't get out of bed that day.
June 9th, I start IV rocephin. Twelve days later on the 21st is another bad day. That is followed July 6th with another bad day. Dr. B states that with IV rocephin, a person has an initial herx and another one about 4 weeks later. This is apparently what happened to me.
Interesting to note too, that I also had a bad day June 2nd, which was 4 weeks after all the IM shots that I had been given....these shots included rocephin....I never noticed that until I wrote this letter to you. I suppose that IM rocephin can act like IV rocephin in giving one a J-H reaction of some sort at week 4.
November 4th has me starting doxycycline (300 mg daily). Eleven days later I am quite ill for 3 days with headache, backaches, neck aches, fatigue and CNS issues (hard to type, talk, walk, etc).
The picc line is pulled December 20th due to fungal infection in the line. Three weeks to the day after the antibiotics are stopped, I am hit hard again with lyme symptoms (see the weeks of Jan 9-20). It is interesting to note that it is 3 weeks after my steroid shot that I get hit with lyme in the first place, and it is 3 weeks after stopping antibiotics that I am hit hard again with lyme symptoms.
I was feeling like normal was on the horizon in December 2005 and early January 2006 (note scale of ``4'' or ``5'' on the calendar). That all ended on January 9th. (Note the ``2'' or ``3'' days after that). (Scale: 1= in bed; 2= can function, but barely; 3= can do daily routine with great effort; 4= daily activities performed with enthusiasm; 5= a 4 day plus lyme symptoms are minimal; 6= don't know yet...have yet to get beyond a 5!)
IM bicillin is started in me on Feb. 15th. Ten days later I am in the ER with extended (3 1/2 hours) and recurrent tachycardia. This is followed March 1st with me feeling quite ill and a circular rash appearing on my abdomen, which is followed by a stiff neck that lasts for 2 weeks (I could not move my head in any direction), and a sore left elbow (which lasts for only 2 days).
In September, due to an ongoing C. difficile infection (since January), I try HBOT as a possible way to fight the lyme. Twelve days after starting HBOT, I end up quite ill with headache, chills, extreme fatigue, very sore low back muscles and feeling fluish. My right knee also hurt. This lasted for just one day. As it turns out, the HBOT did benefit me. It did not cure me, but it increased my stamina significantly.
In January (on the 29th and 30th), I decided to try 2 more hyperbaric dives. Interestingly enough, 11 days later (on February 9th) I ended up with headache, chills, nausea, malaise and fatigue. I was literally in the horizontal position, unable to move for 3 hours. It appears that 2 dives are enough to cause a herx in me.
So, in me, when I am given things that reportedly kill off Bb (like antibiotics or HBOT), I get a significant problem day 10, 11 or 12 after starting that therapy. I don't know HOW it will hit me (I never would have guessed extended or recurrent tachycardia). But, due to previous experience, I now know that something will hit me and it is best for me to be in town. (I was out of town when the tachycardia hit).
All this is to say, that my experience is different than what you stated. I do get hit repeatedly with what I believe is a J-H reaction. If you see it differently, or think that something else is happening to me or have any questions, don't hesitate to contact me. I do not talk myself into having these ``events''. For months I had no idea what a herxheimer was...yet I had them anyway.
It also appears that HBOT is effective in killing off the Lyme bacteria. It certainly helped me to feel better, and also gave me definite J-H like reactions upon starting treatment both times.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
In response to Bpeck, a trained technician will be able to identify DCS decompression sickness or the "bends"
What she is discribing is a herx and here is the explaination summed up.
A herx will resolve itself as time passes and your body releases the toxins that are making you sick.
DCS is only resolved by putting the patient once again into a hyperbaric chamber and desolving the air embolus...
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Oh geesh- Yes. Oxygen only...sorry about that. What was I thinking? Hope it was a Senior moment and not a Lyme moment. I just refreshed my memory with this site.
posted
Robert does have a great site BPeck... If you would like to do research on any subject matter pertaining to HBOT I would be very happy to help.
Blessings to you,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| 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!
![[hi]](graemlins/hi.gif)
![[Wink]](wink.gif)
) Timaca![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic