I thought I'd provide an update to our daughter's (Nikki) progress as she undergoes treatments at an Hyperbaric O2 Center.
Nikki has been at the HBO location since the first of February and has done 25 dives to date.
After the first 8 to 10 dives she became really ill and had a real hard time getting up every morning to get to the chamber.
Now after 25 dives she is showing some real progress from the treatments.
Her migraines have just about disappeared, which is a real blessing. Her muscle and joint pain have decreased considerably, again another blessing.
She's still pretty sick and has no energy. She goes to her dives at 10:30 in the mornings and gets back to the apartment we've rented around 1:00 in the afternoon.
She sleeps from 2:00pm until around 6:00pm and then has a few good hours until she goes to bed for the night (my wife has taken a leave-of-absence from her job and is there with her).
We're really looking forward to getting her back home and see what the results will be.
I'll keep you all posted on her progress over the next few weeks.
FYI - I had originally posted a short video on YouTube of Nikki and the HBO chamber, but I was asked to delete the video because of HIPA issues.
LymeDad
Posted by Jill E. (Member # 9121) on :
Thank you for the update. Another Lymenetter and I were PMing, wondering how everything was going for your daughter and your whole family.
That's great that there is some progress. Any relief of symptoms is a blessing!
Please pass along our good wishes to her, she is obviously strong to push herself through the difficult times in order to see the better results.
And how wonderful her mom is there with her - I know what a sacrifice these things are for the whole family. My family has sacrificed so much to help me.
Jill
Posted by jif (Member # 9215) on :
thanks for your post on hbot!
Posted by BOEJR (Member # 1734) on :
Hi lymedad,
Thank you for the update, Can you tell us if she is on any antibiotic therapy? If yes whether it is oral or IV and which one?
Blessings,
Julia
Posted by DolphinLady (Member # 6275) on :
lymedad, thanks for the update. wishing you all the very best, dl
Posted by mag (Member # 8920) on :
hi lymedad,
good to hear from you
i was wondering how the dives were going Happy to hear there is some improvement
I met a lady from maryland 0 she was able to meet the pharmacist at the HBO.
take care
mags
Posted by bettyg (Member # 6147) on :
hi dad,
glad nikki is doing so MUCH better with the dives and having mom there to comfort/support her. yes, you 2 have made huge sacrifices for your daughter to help bring QUALITY LIFE back to her/you all again.
god bless you both for the 24/7 SUPPORT you have given her on her lyme journey, and how you changed your mind set from disbelief to 24/7 BELIEF in her and helping her get well.
thanks for updating us on dives and your videotaping. give them both these ok and oh, include yourself in them as well holding down the home front!! Posted by lymemomtooo (Member # 5396) on :
Lymedad, thanks for the update. This is something that I have been interested in for awhile for my daughter and was one of many recommended things from the brain damaged clinic experience.
Not sure we can get insurance to agree however. But it will be an option. lymemomtooo
Posted by lymedad (Member # 8074) on :
Julia,
In answer to your question, yes she's on several antibiotics:
Rocephin IV 4 Gms per day - 2 Gms per infusion twice a day, Plaquenil, Ketek & Mepron.
I wish that were all, but she's also taking a heavy load of pain medicines. We hope that's the first thing we can start getting rid of as soon as we get back home.
Thanks to you all for the words of encouragement. We really do appreciate all of you.
LymeDad
Posted by timaca (Member # 6911) on :
Hi Lymedad~ Thanks for the update. I hope your daughter continues to improve.
I've continued to do 2 hyperbaric dives every 2 weeks. Interestingly enough, I still get a significant herxheimer response after the dives. Thus, I will continue to do some. I plan on doing just one dive next week and see if I still get a herx reaction. I live 2 1/2 hours from the nearest chamber, so doing a dive takes lots of time.
How is your daughter's vision? Has she experienced significant changes?
Timaca
Posted by oxygenbabe (Member # 5831) on :
i hope she continues to do well lymedad.
Timaca, younger folks are much less likely to get vision changes. I believe the vision changes are due to oxidation of the lens, not pressure (otherwise scuba divers would report frequent myopia), and that this is mainly due to the shape of the vitreous membrane. It can be more degraded in older folks especially lymies since some of these infections like the ocular nerves etc. A degraded vitreous membrane allows more oxygen through to the lens. Thats why even with normal living by the time youre middle aged you tend to start getting presbyospia and by old age, cataracts. HBO just speeds up that process. So this girl is unlikely to have vision issues.
Posted by Jill E. (Member # 9121) on :
Hi again, Lymedad,
Wow, she's a strong young lady to be tolerating those medications. She's a trooper!
I'm sure you've been told this, but given that she's on Ketek, make sure her liver enzymes are checked much more frequently than with other antibiotics - perhaps every two weeks.
I am one of the cases of serious liver damage from Ketek, even with frequent liver tests. So please make sure she is monitored closely, as I'm sure you are.
Take care, Jill
Posted by Marnie (Member # 773) on :
Cataract capitol of the world...Florida.
Eye doctor on every other corner...banks on the others.
The "blue" part of the light spectrum is very harmful to our eyes. Need sunglasses..."blue blockers"/UV blockers to protect our eyes. Some sunlight is needed (to trigger the conversion of melatonin to serotonin), but not too much.
Then there is the problem of too much TNF alpha, IL1 beta and "factor H" which is linked to macular degeneration.
Factor H is the "brakes" for our immune system which is in hyperdrive.
OspE binds to factor H.
Read my "H16" post and find the drug that binds the toxins which are released as the keet dies.
Discuss it with her doctor.
She is on a LOT of POWERFUL meds that have to go thru the liver.
Where are the B vitamins?
This pathogen absolutely does NOT like oxygen (in all its forms).
I hope she continues on a road to health. Youth is on her side.
Posted by lymedad (Member # 8074) on :
timaca,
My daughter (Nicole aka Nikki) has experienced problems with her vision and her eyes in general.
She complains of sharp pains in her left eye and she is unable to wear her contact lenses now.
She says the contacts won't fit her eye, almost as if the eyeball itself has become misshapen.
I think she is still experiencing herx reactions although they have decreased in severity. When she gets back to the apartment after the dive, she's pretty well worn out for the day. Her energy level is zero.
The biggest positive impact from the HBO sessions has been in the area of her migraines - they've all but disappeared.
Additionally, her joint and muscle pains have decreased significantly.
Oxygenbabe,
I probably haven't mentioned that Nikki is almost 30 years old, not really "older" but probably not as young as most would assume.
I'm not sure of the severity of her eye problems as compared to someone older, but she's been complaining for a couple of weeks.
The one assurance I've tried to provide her is for her to consider the technicians that dive with her group every day.
There are three technicians at the HBO Center that take turns accompaning the patients at each dive session (there are four sessions every weekday).
We've spoken to each of them and they all concur that they have had no permanent problems with their eye sight.
Jill E.,
I've told her more than once that she's one of the bravest people I've ever known. She's not always in the best of spirits, but she's always fighting.
About once a year, we have to just stop all medicines and let her body rest, I think we're at that point right now.
She's not been able to keep anything on her stomach for the past few days. She has an appointment with Dr. H on Thursday and I'm hoping he'll allow her to take a break.
Thanks for the input. Nikki has been having liver enzyme blood work done every week since she's been on the Ketek, so far no problems.
Marnie,
I don't know where the B complexes are? She's on so much medicine and supplements that we all get a little confused at times as to what is needed.
We've relied on her LLMD specifically for her medicine protocol. He hasn't suggested any B Vitamins up to now.
I will speak with him this Thursday about them.
Thank you for your concern.
Thank you all for your input, it is appreciated.
I can tell you that this thing can really weigh heavy on the patient and the care takers at times. We really appreciate the support from you all.
Sincerely,
LymeDad
Posted by oxygenbabe (Member # 5831) on :
Hi Lymedad...a few thoughts.
1) Ask the technicians how they know there was no permanent eye damage (is this at Chico? Because I personally had spoken to several who had permanent eye changes, ie mild damage, and yet when I spoke to him before doing 2 months of hyperbaric in Great Barrington, he insisted nobody had had such). Frankly, people don't go back to the center six months or a year later to say, My eyes never returned to baseline. But it definitely happens.
2) If she's 30 and having eye changes please ask her to close her eyes in the chamber. Yeah that sounds boring, she's probably using a hood and so what can she do? Let them pipe in music, let her rest and meditate. Don't let all that oxygen go through the permeable cornea as well. It may help her eyes to have less oxygen. And also even though they hydrate it (or should be--it should be bubbling through water) it can be drying. So closing her eyes may help that too
3) She *is* on a lot of meds and I'm not sure, I honestly don't know, if htat's a good idea. The amount of die off may be taxing.
I also had lymegraines (that's what I call them) that the mild hyperbaric home chamber cleared up a lot. I'm glad her lymegraines are gone.
TNF alpha goes up with all this killing--and that can lead to pain and exhaustion.
Pleaes consider maintenance therapy for her after this intensive period is over, and while she continues to take her meds.
Give her a hug for me.
Posted by cordor (Member # 9449) on :
I am a 49 year old woman who underwent Hyperbaric Oxygen treatments for Lyme. My Lyme doc did not know what else to do....I was very ill, even after IV Rocephin and orals. My stomach was a mess and I was down to 88 pds.
He asked me to try hyperbaric, almost as a last ditch effort. He is a very "traditional" lyme physician....but actually he is the one to suggest it.
I went everyday for about 8 months. I never got to the full theraputic pressure because of some inner ear problems.....but I can tell you I did have some vision changesand eye pain. I was told this was normal and that my vision WOULD return to normal....which it did.
I had very bad HERX's for the first few months. I also was completely exhausted after the treatments and had to sleep for the entire afternoon. That did improve with time.
The biggest improvement I had was that I got my appetite back. I also got some color back in my face. (I literally was gray for awhile prior to treatments)
I was NOT on antibiotics while doing the treatments. I did them at a pediatrician's office in Parsippany, NJ. She has 3 separate full body chambers.
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