kgg
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Member # 5867
posted
Thanks, HW88. Appreciate the cyber hug. Stress. Big time stress is I think what triggered it.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
UGG yep. stress is a trigger for sure. I hope you find a way to decrease your stress.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Hi folks, Sorry if this has been covered before...can't read a long time on a screen...i have done a lot of mhbot in my own chamber but for the past 8 months or so did not do it. Question is about nasal cannulas vs mask. the cannulas are so much more comfortable for me. i have a 10 LPM oxygen concentrator, and with the mask, i use it at 8.5. what is the best setting for using cannulas? it seems like 8.5 produces a really strong flow. also should i be humidifying the oxygen when i use cannulas (it feels a lot more drying than when i use the mask, and i never use the bubbler when i use the mask.)
thanks very much for your help.
Posts: 4 | From Arizona | Registered: Apr 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi CeeDee~
I would not recommend using a cannula with mHBOT, as they are only designed to be used at flows of less than 6LPM, and deliver less 02 than a simple Hudson mask.
As previously suggested on this thread by jcarlhelp, you might try an "Oxymask" (by Southmedic). It is an open mask with a diffuser that can be used with higher flows, and delivers more 02 than a cannula, and possibly more than a simple Hudson mask.
I have tried the Oxymask and found it very comfortable, but it has a strong smell that has never off-gassed completely, so I continue to use the simple Hudson mask.
What is the make/model of your oxygen concentrator? If it is an AirSep New Life Intensity 10LPM (20 psi), it should be set at no higher than 8LPM.
Posts: 1880 | From Earth | Registered: Jul 2013
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I can not seem to get my feet under me. I've been at full protocol for 8 mo. Off antibiotics for 3 months. I crashed for 2 months after coming off antibiotics. March has been a bit better at the beginning, but I recently crashed hard again.
I feel like I had maybe a week where I felt I was as well as I was before coming off antibiotics.
I'm doing my best to eat grain/dairy free. I'm not perfect here, but much better than I was. I'm drinking bone broth and trying to heal my gut.
I'm having my hormones tested since I seem to crash with hormone changes.
WHAT ELSE? What am I missing?
I know patience, right? but I honestly feel like I'm going in the wrong direction. I have been on the couch today thinking, "This is how I felt before I even started treating for lyme."
Could hormones be playing that big of a role?
I feel like I should be better for being at this for 8 months.
All thoughts are welcomed.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
HW88, did you treat yeast when you came off of the antibiotics? I went to one LLMD that when her patients stopped antibiotic treatment she put them on a yeast cleanse for at least 30 days if not longer.
Yes, hormones can make a big difference. But it is individual as to how big.
The other thing it could be is chronic viral infection like EBV or HHV6. The only way to know if it is viral is a blood test, I think.
Another thing to consider is mold. There are some people who can be severely affected by it. We found it in our laundry room at our last house. It can be a Pandora's box looking into mold. I would encourage you that if you do, don't get overly involved with the mold groups. It makes the drama in the Lyme world look mild in comparison.
I am in a similar circumstance as you. I have done the lifestyle modifications and am not happy where I am health wise. I discussed it with my husband and I called a Lyme doc yesterday for an appointment. They have not returned my phone call yet. I don't want to go back to a full antibiotic protocol. But I don't want to do this solo anymore either. I feel like sometimes I just need an objective medical person to give feedback and wisdom opposed to winging it. The problem is limited funds, location and who is available as with most people with Lyme. But I feel like I need to do something. Sometimes that's a good thing sometimes not. Time will tell.
Hang in there. You are not alone.
Posts: 1685 | From Maine | Registered: Jun 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88~
Yes, you have been doing mHBOT for 8 months, but that is not an extensive amount of time considering your circumstances.
During that 8 months, you have made a lot of changes, including tapering a benzodiazepine and quitting antibiotics. These types of changes, especially if they were done quickly can, and usually does, make the mHBOT process take longer. You also had mentioned being under stress.
I have known people who take a year to get off of antibiotics while doing mHBOT, then start counting their months of treatment from that point on for progress comparison purposes.
I do think there are hormonal issues (and possibly thyroid imbalances) contributing to your crashes, as the timing is consistent and cyclical. Hopefully your tests will reveal some issues so you can get support in that area to help balance your body.
Also, you have also just recently made dietary changes and, healing the gut takes time. We did talk about an anti-yeast diet as well.
I do understand your frustration, and am happy you are looking deeper for reasons for your crashes. I just wanted you to know that when you compare time frames and progress, there are many individual variables to consider.
I am looking forward to hearing the results of your testing...
Posts: 1880 | From Earth | Registered: Jul 2013
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I have made a lot of changes over the time frame. That is true. I have not done anything for yeast specifically.
Because my crashes tend to happen along with my cycle, I am REALLY hoping hormone therapy will be helpful. It just SO hard to feel so low. I am having blood work done for my thyroid tomorrow.
I will keep everyone posted on my hormone results.
I may start seeing a functional medicine dr. He is also a LLMD, but he may help with nutritional deficiencies, the viruses kgg mentioned or other hiding factors.
<sigh> It feels like I keep re-setting my healing clock.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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I have to second what Phoiph wrote above. You can’t rush mHBOT and adding “other” things seem to complicate and slow down the healing process.
I stated way back in one of my early posts after reading the entire thread that I noticed the people that chose to mix therapies with mHBOT didn’t seem to do well and became frustrated with oxygen therapy.
Kgg how long have you been treating at full protocol?
I didn’t look at hormones until I was nearing the end of my second year around 800 dives that I went to a hormone specialist. I think it was my 7th month that I had a very big crash after some stress and was down for 3 weeks. Even after my 2 years of treating I had a setback when I started work.
Are either of you journaling so you can see where you have come from? I know if I didn’t have my journal and videos I would have been deeply depressed when I hit a setback.
I don’t know how Phoiph feels about adding new therapies before a solid 2 years of treatments but I wouldn’t do it. That’s just me, I committed to 2 years of daily treatments with no other therapies to give oxygen a shot. Lord knows the other therapies failed me.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Thank you Peimomma, Yes, I journal in quite a bit of detail. Like phoiph said, there have been a lot of changes--decreasing meds, etc.
I just feel like I keep crashing and don't have the overall up pattern. I'm doing my best to do my part. At some point, I need to see some better days though.
I keep thinking I will have the 'I felt much better after that crash' experience, but I'm not. I barely reach the point I was at before the crash for a few days and then crash all over again.
I really do believe in mhbot. I really think it will get me well. I'm just not sure how to hold myself together until then.
I'm holding on to hope, though.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
HW88, I tend to agree with Peimomma that you shouldn't mix too many other treatment modalities with HBOT, however I do not think that balancing hormones will interfere in any way. As long as your doctor monitors your levels with testing, you should just feel better from the hormones.
I started hormone therapy around the same time I started HBO and I think they worked synergistically.
Just a thought...Do you take antioxidants? They can block the healing response to the HBO.
Hang in there.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
I do not take antioxidants. I really don't do anything right now except mhbot, diet and trying to move my body.
I wanted to thank everyone for commenting and sharing experiences and love. It really does help to not feel so alone.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Dear HW88 - hang in there. It takes real time for this to work. Jan 29th was my one year anniversary and I can tell you hands down this year is a lot better than last. At times I feel really normal. I credit mhbot for that.
Since I am rather new to this and everyone else like Digby, Phoiph and Peimomma, I would listen to them. Just wanted you to know that you are in my prayers and I believe you will turn the corner .... have faith. I know it is hard when times are tough it is always darkest before the dawn. Bless you.
KGG, sorry you are going through a spell too. Stress sent me into one but I seem to be gaining my ground back. For the record I am on herbals, mhbot and use rife some. Largely because I when I started, I crashed if I did not have rife and the herbals, with a recent babs flare, I am not willing to pull yet. I would say overall, I have made great strides.
One think I will mention that I do think has really helped me has been detoxing. Like Peimomma Coffee enemas really helped me at times and still do. I also think the infrared sauna really helps. Next, I eat VERY clean. No sugar, grains or dairy (largely due to allergies) but still eat the GAPS diet as my foundation and cook all my vegis down in bone broth. I am on progesterone and some testosterone with hit or miss periods. I used to flare notoriously the first week of every month and now that has abated pretty well. I am still under Dr. H's care and practitioner in NC re: rife. I am not the poster child for how to do this but due to running two companies, I have found what I have to do to keep them up. I hope one day to be confident in dropping periodic rife and herbals but I am not there yet.
Thinking of you all and knowing at times this is really hard. You have to remember the peeling of the onion. I was much sicker before I was at this place. God bless you all.
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
So, Good news....I finally have had about 4 days in a row that I feel at a somewhat functioning level. This is usually the point I get before crashing.
Bad news. My sleep Dr. is making me taper off klonopin right now since it's not helping with my sleep. This is going to be rough. oh people, pray for me. This medicine is nasty stuff and I crash hard when trying to decrease.
I'm still eating clean and I will get hormone tests soon. I feel like I have TOO many working pieces right now. Hopefully once I'm off klonopin, I will have a steady ground to work from.
posted
Hang in there HW88 -- yes Klonapin is tough to get off of. I will be honest in telling you, it is worth doing as you know. Hang in there. What about something like Ambien for sleep? Or even, Melatonin and gaba? Thinking of you and praying for you... Just took my melatonin and gaaba. Hugs!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Thanks willbeatthis! I'll keep everyone posted as the week goes on. I have tried a lot of things for sleep. When my body doesn't want to sleep. Nothing works.
I'm doing o.k. I cut the dose by a smaller amount this time. We'll see how it goes.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Thanks, Willbeatthis. I appreciate your response. I went to my physician and he put me on Biaxin for a month for chronic sinusitis. My daily afternoon low grade fever is a little better. I plan on starting some herbals when done because it is causing a herx.
HW88, that is wise to take the taper slower.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
KGG, keep us posted. I'm glad a few things are a bit better. Hopefully they will continue.
Can someone tell me how mhbot helps the immune system 'turn back on'?
I've read through this thread and also read oxygen revolution, but my ability to 'hold' information in my brain is seriously lacking.
I was just wondering about it this afternoon. I've had some new things pop up. Wondering if it's just another layer of the onion. Wondering if my immune system is 'turning back on' and how to know if it is getting better or not.
Anyway, just wondering.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
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Member # 41238
posted
HW88~
The short answer would be that mHBOT helps block the action and toxins of certain bacteria, assists tissues in resisting infection due to increased oxygen/blood flow, increases the white blood count and improves their ability to find and destroy invaders.
A longer list of benefits supportive of immune function might be:
Activates 8,101 healing genes, stimulates DNA to produce growth and repair hormones and receptors, reduces inflammation, reduces hypoperfusion,/increases blood flow/circulation, releases stem cells, improves immune function (increases white blood cell production), promotes angiogenesis (growth of new blood vessels), has antimicrobial properties/treats/helps prevent infections, improves cellular metabolism/efficiency, assists in healing and regeneration of neural tissue, promotes wound healing, decreases biofilm, reduces swelling/edema, increases production of collagen, reduces pain in certain conditions, improves bone regeneration improves rate of healing from surgeries, decreases effects from radiation injury, improves recovery from athletic over-training/injury....etc.
Posts: 1880 | From Earth | Registered: Jul 2013
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Phoiph
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Member # 41238
posted
HW88~
I am concerned because you have recently been experiencing severe symptoms (which you think might be related to hormones, but have not received your test results yet), and are now going to wean off of a powerful benzodiazepine (which sent you into a crash last time).
Would it be possible to talk to your doctor again and rethink this as a future goal once you are stabilized and the hormonal questions have been answered?
It is very difficult to make sense of symptoms when many big changes are made at once...
What are your thoughts?
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
I totally agree with you phoiph. My sleep dr. Doesn't acknowledge lyme though. I say something about it and she just changes the subject. She doesn't get it.
I feel similar to before starting antibiotic treatment. I crash, barely get my head above water for a few days and then crash...repeat. I really don't want to add weaning off klonopin to the mix until I feel more consistent.
I feel like I have too many moving peices. I'm not sure what else to do.
Trying not to lose faith in the process I have chosen, because logically it makes sense. I know I have more variables than when phoiph or peimomma started, so it's hard to compare but I feel I'm struggling more than not....
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
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posted
On 4/12 you posted that you finally had 4 good days "at a somewhat functioning level", but that this sometimes happens right before a crash. How have you been since then?
Are you having adrenal testing as part of your hormone panel?
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
I had 6.5 good days. Then ... down I went. But, I decreased klonopin on day 4 So the crash could be from klonopin (although I didn't decrease by much).
Also, I'm about 5 days from period, so hormones could be playing a role also. I should get my test results back today even though my dr. Appt isn't till next week.
Yes, my adrenals were tested. I'll post later once I get test results back.
I would love to get some forward traction, but I have too many moving pieces to get moving forward.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
So, I FINALLY have my hormone appt. tomorrow. I got back the results, but don't understand them all, but my estrogen was super low and a few other out of whack issues.
I could use any good vibes/prayers this way. I'm not sleeping and I just cry all the time.
I have no clue if it's herx, hormones, withdrawal, or digressing. I'm hoping hormone support will help at least enough for me to keep moving forward. I REALLY don't want to go back to antibiotics, but I will if I don't see improvement from hormone therapy.
hugs diving team. -H
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi HW88
I'm not on the diving team. . . yet.
But I would still like to offer you strength and resolution to your current situation. Your fighting spirit is still intact. Your hormones are just another piece to the puzzle. And without proper sleep every night, you will struggle daily. You must find a way to get a decent night's sleep, so important.
Sending prayers and will be thinking of you tomorrow. Hope you find relief asap. I am picturing you smiling as you leave your doctor's appointment. Posts: 2977 | From Florida | Registered: Nov 2016
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posted
HW88 For what it is worth I have found so far that Cordyceps powder helps me sleep Molybdenum does too (among other things) I use a lot of things but I already listed them to you
Posts: 261 | From California | Registered: Sep 2017
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BB you should join the diving team. I really think it has been the best thing for me so far. I've hit a wall coming off antibiotics, but I'm hoping it's just a snag.
I do need to figure out good sleep. Hoping hormones will help.
HH, I have the list of things that helped you. Most of them I've tried, but there are still a few I'm planning to look into. Thank you so much.
I'm pretty sure Bart in my insomnia culprit.
I'll keep everyone posted tomorrow on my experience. Hope it's good.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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So, for those of you interested in my test results, read on. For those of you not... skip this post.
So, I thought my ESTROGEN was really low, but it's ok. Actually the bad kind of estrogen was low. The other two are good.
PROGESTERONE needs to be a bit higher and will also help stretch cycle to 28 days: STARTING PROGESTERONE CREAM
Cortisol and cortisone patterns; o.k., not great. STARTING ADRENAL SUPPLEMENT--BASICALLY ADAPTOGEN HERBS AND PHOSPHATIDYLSERINE
ferretin: 33 needs to be above 90. (2 years ago when I couldn't eat meat, it was 16. So in two years It has come up some.); WILL START DESSICATED LIVER SUPPLEMENT--Iron supplements are hard on my stomach.
Vitamin D3: 35. Needs to be 60-80. STARTING D3 WITH K1 VITAMIN SUPPLEMENT
SEROTONIN AND MELATONIN LOW: possible 5htp supp.
THYROID: All the numbers are within range. However, my ratio between FREE T3 and rT3 is 12. She wants it above 20. Which basically means my body doesn't have enough of the active form and too much of the inactive form: STARTING VITAMIN SUPP. WITH THYROID SPECIFIC VITAMINS (Iodine, zinc, selenium, etc.). ALSO VERY LOW DOSE OF FREE T3.
oxidative stress: GREAT. Thank you mhbot. Methylation: GREAT. Thank you mhbot. Glutathione: LOW. 31 should be 37-70
O.K. I think that is basically it. There were other things tested, but they were o.k.
Would love to hear phoiph's thoughts on this if she is around. Also, anyone else with experience with any of these supplements, etc.
I'm hoping for some improvement. If nothing else, better sleep!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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It looks like you have a few more pieces to your puzzle. My E is fine for the most part but I get a little with my T pellet due to headaches I was getting at my period. I started having a cycle every 2 weeks and they decided I needed P to “thin the grass” as my doctor stated.
She said I also needed D3 and fish oil for cramps. The P definitely helps you sleep and is why they recommend you take it at night.
Looking forward to an update
Posts: 233 | From AZ | Registered: Jan 2015
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posted
30 Dive update Hello I wanted to give an update on how I am doing after 30 dives one hour per session 3 or 4 times a week every other day some of this is subjective
Lessened allergies: cheese eggs milk cause drying out of cuticals reduced about 60%
Fingernail growth accelerated and harder (started with first dive)
Facial skin tightens after each dive
Decreased Herx after dives
Exercise can go 10 minutes more slow pace swimming takes less warm up time more staying time under water
Heavy exertion does not produce as strong PEM
Increased muscle strength after each for about an hour
A coffee retention enema with one tablespoon ground robusta beans from deans beans held for 15 minutes with chlorella taken early in the day has reduced kidney pain coming from die off 70 to 80%
posted
Thanks fornthr input peimomma and IN. I will keep you posted. I was happy to learn a few more pieces to the puzzle.
HH, love to hear the positive updates.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
HH, thanks for posting your encouraging progress.
HW88, I am not sure how I missed your post on your results. There are lots of reasons you feel the way you do! As a heads up on the 5HTP. If you have a stomach that does not tolerate B vitamins, many of the 5 HTP supplements have them in it. So be a label reader. I think it was Allergy Research Group that had one that did not have them in it. But not totally sure.
Take your Adaptans early in the day, so they don't interfere with falling asleep. Use the Progesterone cream at bedtime. It helps me with sleep.
Hopefully, with your dissected liver supplement you can get your Ferritin up and feel more energetic. Can't think of anything else. I hope that by addressing these things you will start feeling much better!
Posts: 1685 | From Maine | Registered: Jun 2004
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Still dealing with those setbacks (we all have)...still do live in fear of falling back,however...slowly letting that go by staying focused on eating right and clean living.
Noticing a trend.....people I speak with throughout this process....it seems diet,light exercise and saying no to things we know are bad for us is very important.
This mindset was very hard for me,however,on those days that I feel 90%...it is worth it.
No antibiotics or herbals,also said no to heart med during very scary heart sensations along with anxiety and panic.
Stomach is just starting to digest much better and here is a list of improvements.
Joint pain much less
Stomach much better
Heart sensations getting better
Energy level good improvement
Blurred vision almost gone
Neuoropathy almost gone
Anxiety level lower
......as for labs...results have changed in many different ways...Male hormone levels have increased,kidney functions are better (was acute and hospitalized with a GFR well below 50 range)now GFR around 68,WBC still shows white cell raised,not out of range (still fighting infection),sodium,chloride,potassium levels always bounce around,however,not as bad,blood glucose is very good.....when this all started my sugar was high?....not now and I do eat 90% paleo....and leaner than I have been in 25 years...gallbladder was 30% functioning 2 years ago with horrible pain...pain is gone and I did not have it removed as requested.
There is so much more....I was a mess...sometimes I still get those sensations in my head,fuzzy,ear ringing,brain swelling,however,I meditate and get through it,fades.
Diving has kept me off the meds and herbals (tried them all)the process is slow but very powerful,I was tired of "shocking" my body with Herx reactions on a constant basis,even when I first started diving,for months I was taking abx and the reactions were constant and rough.
Still doing 1 hour per day....couple times per week I step it up to 90 minutes (now I feel my body can handle it)...take an afternoon nap daily-meditation.
Red rashes still show up on my thigh regions,not a s pronounced,like 3 years ago even last year.
Working out with light weights 3 times per week and walking 2 miles per day 5 days per week....used to be very athletic,just had to tone it down....Cardiologist doesn't think I should run my heart rate up yet.
Patience I never had.....now I do....gift??
Wishing all well and keep diving and inspiring)
reminder
sorry about the jumping around,lot's to say,just can't glare at the screen too long or I do get a minor visual blur
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
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posted
Reminder, it's always good to hear positive updates. REALLY good!
KGG, Thank you for your thoughts. Have you had experience with adaptagens? They are in the supplement she wants me to take at night in order to lower cortisol. In your experience do they help calm or stimulate?
Thanks for the heads up on 5-htp. I usually do ok with b-vitamins. I'm adding all these things one at a time, so I'm taking it slow.
REALLY hoping it will help with sleep.
Hugs to everyone. H
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
So happy for you, Reminder! Long may it continue! And yes, patience is a gift.
HW88, yes, lowering cortisol at night helps with sleep. Some of the adaptans I have been put on had adrenal cortex in them. That is what I found I needed to take early in the day, otherwise it would interfere with my sleep.
Good to hear you are adding things one at a time. Smart.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
Thanks kgg, My supplement doesn't have adrenal cortex in it. I'm saving that one for last because I've had bad experiences with herbs at times and always react strongly to them.
How are you doing kgg?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Informal Poll Hello All How many of you believe your Lyme disease was triggered or exacerbated by some stressor in your life ? Emotional physical etc?
Thanks very much
Posts: 261 | From California | Registered: Sep 2017
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posted
I had manageable Lyme disease for many years but after a major stressor (surgery with complications) it completely disabled me.
Posts: 539 | From NW Arkansas | Registered: May 2003
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I am 60. (I can't believe I just wrote that! Where did time go??!!) I have had Lyme since I was 10 when they thought I had juvenile rheumatoid arthritis. Anyway, stress always causes me to flare. I was hoping that diving would prevent a flare, but that was not the case for me. Of course, my stress level has been off the charts, with surgery, death of my sister and then a move. I will say that my level of functioning has not dropped as low as I usually do. For that I am thankful and credit diving for that.
HW88, I am doing better. Thank you for asking. I am able to walk a mile or two almost every day, without payback. I am not spending my afternoons in bed anymore. So that is an improvement. My sleep is still broken. Rare is the night I make it passed 3:30AM. I took two weeks of Bactrim then switched to Ceftin per my doc. I am hoping I won't be on it long as in months because my stomach doesn't tolerate it indefinitely. I check back with my doc in 4 weeks.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
I'm not sure if I had a stressor that triggered it. I know it was gradual and that I had 'episodes' before it full on took my life.
Soo, venting. . . And I'm sorry for this, I just need people that understand what I'm going through to hear me.
I didn't sleep well last night... again. I don't feel like I"ve slept hardly at all since coming off my antibiotics in December and even before that, it wasn't great.
I'm an emotional ball. The Anxiety shoots through the roof when I don't sleep and my brain and eyes just feel like they are on fire. It just WON'T SHUT OFF. I literally feel I'm going to have a break down at times.
I did have about 4 pretty good days again... I'm slowly adding in the above mentioned meds. But I feel like if I don't get consistent sleep soon, I really am going to lose it.
I'm sorry to be debbie downer today, I just cry and want this to all end.
BLAH, ok, I'm going to stop crying and go for a short walk. then maybe try and rest. I don't know how much longer I can do this. I need sleep!
I wish there were something we could do to help you get a good nights sleep.
You said you started having sleep problems when you went off antibiotics why not go back on them or try and herbal antibiotic? I used to use an herbal formula fashioned by Steve Buhrner it was pretty cheap considering how long a bottle lasts
I am sure you have considered these options
Posts: 261 | From California | Registered: Sep 2017
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Phoiph
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posted
quote:Originally posted by Hominahomina: Informal Poll Hello All How many of you believe your Lyme disease was triggered or exacerbated by some stressor in your life ? Emotional physical etc?
Thanks very much
Homina~
I was not under any unusual emotional stress when I became ill with Lyme, and I was in the best condition of my life, physically. Even so, I hit rock bottom.
That said, after becoming well with mHBOT, I have faced some intense emotional and physical challenges over the last 5 years without regression or relapse.
I hope that is encouraging!
Posts: 1880 | From Earth | Registered: Jul 2013
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kgg
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Member # 5867
posted
HW88, I continue to wake a 3:30am recently. It is frustrating. But to deal with the insomnia you are dealing with sounds beyond words. I don't want to be a stumbling block to you if you are trying to only use mHBO. But why not go back to an antibiotic? I am not talking about multiple. But I have found some of my symptoms improved with going on Ceftin.
To me, sleep is foundational and very important. Used to be that most LLMDs addressed sleep first because it is so important.
{{{gentle hugs}}}
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
Thanks HH and KGG. I am seriously considering taking at least 1 of my antibiotics. I didn't sleep well even on antibiotics, but it was MUCH better than right now.
Also, my mental state is quickly going down hill. I'm having days of anxiety, panic, extreme crying fits and complete brain fog are taking over. I really wanted mhbot to be the only therapy, but right now I have to pick sanity.
I'm slowly starting to take the things for my above hormone, thyroid, and deficiencies. But I'm seriously having meltdowns daily. I can't take it and I have 4 kids to care for.
I'm trying to get into a different LLMD. One that has been highly recommended and takes more of a functional medicine approach, but he's booked until late aug.
Unless I get sleep and can get a grip mentally, I won't make it till then. Uggh. I feel so conflicted in what to do.
I've been off antibiotics for 5 months and feel I'm losing ground despite the positive changes.
Bartonella is my culprit....and it seems to be winning this war.
Thanks for the love, prayers, concern and advice. I'm going to give my hormone therapy 1 more week and I will probably start back on 1 of my antibiotics.. <sigh>
I feel like I will never make progress. So very discouraged. Thank you for the gentle place to land.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Thanks HH and KGG. I am seriously considering taking at least 1 of my antibiotics. I didn't sleep well even on antibiotics, but it was MUCH better than right now.
Also, my mental state is quickly going down hill. I'm having days of anxiety, panic, extreme crying fits and complete brain fog are taking over. I really wanted mhbot to be the only therapy, but right now I have to pick sanity.
I'm slowly starting to take the things for my above hormone, thyroid, and deficiencies. But I'm seriously having meltdowns daily. I can't take it and I have 4 kids to care for.
I'm trying to get into a different LLMD. One that has been highly recommended and takes more of a functional medicine approach, but he's booked until late aug.
Unless I get sleep and can get a grip mentally, I won't make it till then. Uggh. I feel so conflicted in what to do.
I've been off antibiotics for 5 months and feel I'm losing ground despite the positive changes.
Bartonella is my culprit....and it seems to be winning this war.
Thanks for the love, prayers, concern and advice. I'm going to give my hormone therapy 1 more week and I will probably start back on 1 of my antibiotics.. <sigh>
I feel like I will never make progress. So very discouraged. Thank you for the gentle place to land.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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I’m sorry to hear of the continued struggle. I may have missed it but can you give us a run down of a day in the life of you?
Maybe Phoiph or someone can see something that is a trigger that keeps you from consistent sleep.
Caffeine/stimulants, what time is bedtime, what time is wake time, relaxation techniques to quiet the brain? What sort of activities do you do in the day, reading, TV shows.....
4 children to care for is a lot to think about, I can’t even imagine the fatigue that comes with that alone.
The struggle is real and this is when the tweaking for each individual comes in to play. I don’t have children and know that can be an extra drain on the energy just being there emotionally and helping them. It would be like me trying to work while I was treating, I don’t think I would have healed as fast as I did. I literally spent 5-8 hours a day doing therapy like massage, CE’s, naps, light walking, MHBOT. I don’t know how I would have fit all that in with children to tend to, and thankfully my husband was self sufficient.
Posts: 233 | From AZ | Registered: Jan 2015
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I don't even know what it would be like to not have responsibilities while being sick. I'm grateful for my 4 beauties, but it is demanding.
My day looks something like this, but of course there are variations.
wake up around 7 (sometimes earlier, later. My insomnia SUCKS, so sometimes I'm up at 4, but get out of bed at 7. Sometimes I just move to the couch and 'direct' until everyone is on the bus.)
I usually try to get my required things done--1 load of laundry, 1 load of dishes, 1 bathroom wipe down. This is what HAS to happen or things fall apart. If I'm doing horrible, I leave them and eventually get to them when I feel a little better.
Hyperbaric chamber at 9 a.m. when my last little one gets on the bus.
After the chamber, I try to run any errands that need to done or piddle around the yard if it's nice enough. I always feel better outside, although I don't have the strength to do much. Sometimes, it's just sitting in the sun. Sometimes I can do some yard work.
I eat lunch around noon. I then rest--watch a movie, listen to audio book, try to sleep (which rarely happens.) for a few hours before my kids start coming home.
My older 2 are good at being self sufficient and get/do what they need to. My younger 2 need more guidance. Once they are home, I try to help with homework or anything needed. On bad days, these things fall through and teachers have been supportive of me when assignments are not turned in etc.(this is usually all done from the couch.)
I next try to prepare dinner.. unfortunately, it is usually something from the freezer isle. If I'm really good, I'll have something in the crock pot.
The evenings are always pretty crazy. This is when I'm usually driving people to/from practices... I CAN'T WAIT FOR SUMMER. Nobody has sports, etc. in the summer.
On Wednesdays, I get a weekly massage. On Sundays, I attend church and try to engage with the family the best I can.
I usually try to make sure I get a walk in somewhere with some light stretching.
That's about it. I'm wondering if my T3 medication is making my brain fog/head worse. Anyone with experience here?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I found T3 to help with energy. But if it is too high of a dose it can cause anxiety. What dose are you taking?
Editing to say, that when I initially started taking T3 I would pulse it because it made my heart beat too fast.
Posts: 1685 | From Maine | Registered: Jun 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HWW~
In our last email exchange, I mentioned that when I was ill (homebound and functioning at a much lower level than you are), at least I didn't have the daily responsibility of people depending on me, which is very stressful and energy consuming. Although I was never able to rest, I still didn't have the added demands that you do.
Peimomma asked a very revealing question regarding your daily routine. I am stunned that you are continuing to maintain this much responsibility/activity while trying to get well.
I know my labs were much more out of whack than yours, and I still got well. It was a 2 step forward, one step back pattern, but I didn't have to put out the energy that you do to function (I couldn't have, actually). I do believe this extreme energy output is impeding your progress, and may explain why you begin to recover, but fall back in a cyclical pattern because your body doesn't have the energy stores to maintain the recovery.
In the past we talked about requesting support with cooking food, etc.,from friends, church/community resources, which you were able to do. Would you also be able to request some help with cleaning, laundry, rides for the kids, etc.? You could still spend quality time with them, just less on the high-energy routine activities.
I know this is easier said than done, but IMO, conserving your energy is crucial for your recovery, and is non-negotiable!
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
I do have a lot on my plate, I guess. It's hard to compare to anything else when this is all I've known. I'm just grateful my kids are old enough to do things for themselves.
I have had SOOO much help over the years. One who came to do laundry, MANY bringing meals, rides for my children, etc. etc.
I do not have permanent help, but I have people to call upon when needed.
My husband is AMAZING and will do dinner, clean up, etc. We usually have to divide and conquer to get everyone where they need to be each night. But I do so little compared to what I should.
I'm not sure I could hire someone to do all of this. It would be a fortune and I don't feel right about asking someone to volunteer this much.
Summer is coming with less demands.
I'm on the lowest dose of T3 5mcg. Just to try and bump my ratio a bit.
Thank you for all the love. I really really appreciate it. I'm in a pretty dark hole right now. My kids may be a big responsibility, but they are honestly the only thing keeping me here. Otherwise, I would just give up. I do not want to ruin their lives though. They need a mom....even a sick one.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Wow, I can’t imagine keeping that schedule when I was sick. That really is a schedule of someone functioning at 75% well.
We all understand the love for your children and husband, but maybe starting in the summer and running through the next school year they don’t do activities after school so you can get some rest. I don’t believe there is any therapy or medication that is going to help you heal until you help your body rest. I know a year seems like a long time but your struggle is real and what a difference it would make to get you over the hump to better days. Basically I see the treatment in the chamber you are doing now as just a maintenance schedule for you, no healing because your body isn’t resting. Meaning you give your body oxygen only to use it on the above daily activities.
You can only take spoons from the next day for so long before the deficit is to large and you crash again. It took me a year to feel like I wouldn’t regress but still had bumps and I wasn’t doing your schedule. All the activities might be hindering your sleep, too much on your plate for your body to relax.
Posts: 233 | From AZ | Registered: Jan 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Well said, Peimomma.
I also understand that this is a mind-shift. It is difficult to ask for help, but it would not be forever.
Imagine the payoff for you and your family. If you commit to taking this time for true healing, imagine what you can give back.
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
Hmm. I understand what you are saying. I'm not sure what you are saying for me to do is possible--which is kind of depressing. I really would have to hire another mother. Even if we cut out extra activities, there is still so much. HAHA
I will have to discuss this with my husband. But I don't see this happening.
I do appreciate your input and thoughts. I'm going to try to think of ways that I could get help in these areas.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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How old are your children if you don’t mind me asking? You don’t have to say, my point is that when I was a child my mom left us a chore list to do because both my parents worked. When I was in 4-6th grade we dusted, cleaned bathrooms and helped with the laundry. It may not have been to a cleaning ladies standard, but it taught us how to clean and responsibilities as well as helping out my parents.
I use Norwex products to clean my house and there is no chemicals needed, just water and a cloth so it’s very safe for children to use. Plus it’s better for your immune system not processing the chemicals when cleaning.
I don’t know anyone that has used MHBOT to get well that didn’t take time to rest and let the body repair. I see it post after post on this page and FB that people are trying to rush getting well using MHBOT. It’s not possible in the majority of cases and many have said that I healed quickly and they believe they are more ill than I was.
Bottom line is I spent nearly every day in my chamber for 60 minutes with oxygen and allowing my body time to heal. The few times I would push myself, Phoiph would warm me to take it easy so I don’t crash. Of course you can go back and read about my setbacks when I over did my activities.
Just my opinion Posts: 233 | From AZ | Registered: Jan 2015
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I appreciate all opinions. My kids also get chore charts. I don't demand a super clean home.
I have been thinking a lot about the above conversation. My husband even read through all the conversation. He said he admits he doesn't understand a how basic things like driving people places is hard. I tried to explain and he was thoughtful.
I do feel I have made many adjustments so I can rest. I have my groceries delivered. My kids put them away. I pretty much buy anything else we need on Amazon.
I'm trying to think of the balance between all of this. Being a mother and resting. My kids are really good to let me rest when I need it and they are old enough to do most things on their own.
I guess it comes down to driving people places, and making dinner that are my biggest drains.
But also, sometimes getting out does me a world of good. I'm not sure the balance, But I REALLY appreciate the conversation. It has given me some things to think about and figure out what works for me and my family.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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It sounds like you are on the right path and have an extremely supportive family. I can promise if you take a year off and cut back to a plan Phoiph suggests you will see big gains. I know my problem was when I saw gains I then did more activity and had a crash.
I also wrote at one point on this thread about the difficulty walking with a foot in each world, the sick/tired world and the healthy good days world.
I had to learn to balance my desire to be productive and take the time to do my daily therapy and rest. Believe me there were many events, holidays and years that past and I have no idea what I did except sit on the couch or do therapy when treating. BUT and it’s a huge BUT the life I live now was worth missing every holiday with friends and family while I was recovering.
I was blessed with a wonderful friend and my first year when I would visit with her we just sat in the garden and chatted, my second year of therapy I was walking around the park with her. I saved my exercise for a prescribed time and counted my house work as part of that exercise. I wore a fit bit to track my steps. I hardly drove my first year except in my town to appts, it’s very draining to be “on” all the time and does take a lot of energy.
In my first year I would tell my husband we can to one “event” a week, going out to eat, or to the mall, a motorcycle ride.... any more than that and I would have been exhausted and would have a hard time catching up. Has your husband read the spoon therapy story? It’s a very good description of the world we live in and how to manage our energy level. Healthy people don’t understand that it only takes them one spoon to make it to 1000 for them and for a person like yourself it would take 4-5 spoons to make it to 10 am. I had a very good friend of mine read the story several years ago before MHBOT and she really understood how tired I was. She cried and asked me how she can help.
Praying God helps you find a balance between life and healing.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Thank you. That is interesting. I will have my husband read it.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88~
We all recognize that you are trying very hard and doing a great job!
You have already identified two major things that require the most energy for you: driving and making dinner.
People underestimate the energy that driving takes, due to the countless micro-decision, reactions, concentration, and filtering out of extraneous information required.
When I was recovering and starting to drive again, I would venture out on a Sunday morning to avoid heavy traffic, and drive only a few miles at a time.
When I returned home, I felt as if my brain had blown a few fuses. I would be zoned out and mentally exhausted, and not able to pay attention to anything more that day.
Same goes for attempting to make dinner and cleaning up. I would actually break down and sob when faced with a few dishes to be washed.
Now that I am well, these tasks are automatic, and seem to require little or no energy, but I am also much more aware and grateful for the miracles our bodies perform for us every day "behind the scenes".
If you can identify and eliminate as many major energy drains as possible, and make the conscious decision that you are doing this for yourself and your family and you are not going to feel guilty about it, IMO over time this could make all the difference.
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
Today I have reached a deeper low. My body feels like it's shutting down--just as it did before starting treatment. I cannot even walk alone. I just keep getting worse and I can not stop crying.
I have decided to go back on antibiotics. Thank you everyone for all the input and help. I feel like I've let you down, but maybe sometime down the road, I will be able to try again.
I am suicidal, and it is better that my family have me here--on antibiotics--than not at all.
I felt the best when doing both antibiotics and mhbot, so i will continue with that until I feel I can try again.
I really really appreciate all the help, comments, etc. It has helped me keep going. Doing all I can to hold on right now.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88~
So very sorry to hear this. Of course you have not let anyone down! Ultimately, you must do what you feel is right for you.
Please keep posting as often as you can; we care!
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
Thanks for the love phoiph. I will keep posting.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
HW88, this is not defeat. It is being strong when you feel so weak. Making the decision to go back on antibiotics is the right decision imho. You have given the effort to be off for much longer than I would have with much more severe symptoms, plus 4 children!! You have continued to be there for your children under very difficult symptoms. Moms do not have the luxury of just hitting the couch indefinitely. But you found what worked for you to take care of yourself and your family. Sometimes the infection is just stronger than our desires, will power and capabilities.
Now, get the antibiotics in you. Be kind to yourself and I look forward to hearing that you are feeling so much better. I believe the mHBO will help you tolerate them much better.
{{{gentle hugs}}} Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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I get it....go with your plan,on meds w chamber and slowly back off again later.
Sounds like you have a very strong support system...good)
Proceed with ONE thought...I AM GOING TO GET BETTER.
The reactions are tough...I still get them,however,diet,diving and rest,plenty of water and many modalities listed by these very knowledgeable people will help.
You sound strong....me,I get angry at this illness(kind of an "oh yeah") and try not to go to that place....everyone here gets it (how you feel).
One step at a time and I wish you wellness soon,
reminder
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
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posted
HW88, You might talk to your doc about starting the antibiotic at a lower dose than usual. There is some evidence that mHBOT increases the potency of antibiotics. You can always ramp up but you might avoid a herx that way.
Wishing you Peace during your journey.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Thank you for your kind thoughts and for being such a gentle place to land. I do need to believe I will get better. It is hard to believe, but if I'm going to get there, I need to believe it.
I'm going to ask my dr. To just start with 1 antibiotic. See if that will take the edge off some of the symptoms and go from there.
Again. Thank you for your support and love. You are all a blessing to me.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
HW88, I've not posted on this thread before, but my heart is really going out to you. My age 20's daughter is the one with Lyme. I commend you for putting one foot in front of the other and keeping on going. It's hard to raise 4 kids under the very best circumstances, much less with Lyme & co "helping."
In any case, if you are still struggling to sleep I was going to suggest you investigate timed-release Melatonin. Sleep is everything, and it's hard for anything to be right if you're not getting quality sleep. My daughter just started taking it and it has helped her sleep.
We can get 2mg timed release at our local Natural Grocers, basically a health food store. Melatonin is a powerful antioxidant that her LLND wants her to take anyway, and while not perfect, it has helped her sleep improve.
This thread, and all of you who have updated through the years, has been very inspirational. We've just begun the mhbot journey with a chamber we bought in March. It causes my daughter to herx quite a bit so she is at about 1/2 hour, 2 days on, then 2-3 days off. She was doing it once every couple of days, but then I read the book "The Oxygen Revolution" and realized the importance of at least 2 consecutive days. She said it's actually helped her to have a couple of consecutive days. Oxygen is flowing into the chamber, but she's not using a mask at this point.
Posts: 1 | From Oregon | Registered: Mar 2018
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Welcome to the thread, Madagascar! I was one of those that started right out at one hour and found it very hard. I was actually thinking of selling my chamber when Phioph convinced me to give it another go at a slower pace. I will be forever grateful for her encouragement. It has been a game changer for me. I hope that will be the case for your daughter as well.
Posts: 1685 | From Maine | Registered: Jun 2004
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posted
HH...Do you have a fenced yard? When I was unable to walk the dogs I would go out on the deck and use a laser which my dogs would chase for 1/2 hour or so. I was easy on me and they loved it. I did have to start wearing a mask to avoid the pollen which I was very allergic to at the time.
Posts: 539 | From NW Arkansas | Registered: May 2003
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I have one dog that needs exercise and we put her on the treadmill to get out some of her energy when I was unable to walk with them.
Posts: 233 | From AZ | Registered: Jan 2015
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