posted
Phoiph, are you well enough now that you don’t need HBOT for tick borne diseases?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10170 | From Illinois | Registered: Aug 2004
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Phoiph
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Yes, I have been well for the last 10 years, med free, and have not required mHBOT to maintain wellness during that time.
I became well after 1.5 years of daily mHBOT, but continued daily treatments for a total of 2.5 years. I had been very ill and homebound for 8 years.
Although I continue to use my chamber on a limited basis for general health benefits, I have been without it for extended periods of time over the past 10 years without relapse.
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kgg
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10 years!!! Wow. It is a wealth of information that can be found here. Thank you!
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Phoiph
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Kgg,
Thanks to you and everyone here. It has been a great collaboration!
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Bartenderbonnie
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Phoiph
Thank you for being such a GREAT Lyme advocate to the Lyme community, especially to the Mild Hyperbaric users!
LymeNet appreciates all your hard work and dedication! 💐
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Phoiph
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Thank you, Bartenderbonnie.
It has been 100% a group effort and everyone here deserves a huge thank you for their contribution in putting mHBOT "on the map". We've come a long way in 10 years.
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posted
Phoiph, I just wanted to add my congratulations on 10 years. Without a doubt, this site, and thread, has helped many people who were a little lost on mHBOT and how to proceed, including myself. Thank you all so much!
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Phoiph
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Thank you, Jazzman, I really appreciate the kind words.
And...thanks again to all the mHBOT trailblazers here that have taken the leap of faith shared their hard-earned knowledge and experience in the spirit of helping others.
I have always been heartened by how positive, helpful, and generous everyone has been on this thread, no matter their current challenges.
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Phoiph
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This link came from Marie at Newtowne, demonstrating how someone with mobility issues can enter a chamber by using an elevated platform.
The 2'x 4' tables serving as a platform can be set at 3 different heights, and are available at Costco:
For those who got better or greatly improved, were you using antibiotics or herbs at the same time? Or, for those who know the thread. were most people on antibiotics at the same time?
I can no longer tolerate them and only sporadically take herbs because I have difficulty tolerating them, my gut is shot, to add insult to injury. I was wondering if that's going to seriously slow down the process.
I've been treating for 2 and a half years but at a low level, often 35 minutes without an O concentrator. And actually the first 5 months were really low levels of treatment, slowly increasing and I was away for 4 months altogether. Anyway, though I probably have about 1/3 of my brain back, my CD57 is only 24 and I'm lightyears away from being able to get a job. I have been at an hour with the concentrator for over a month now and won't reduce it back down because it no longer turns me certifiable from the die off, I presume. Also, for the record, I did do an hour a day for some months a couple years ago, first a couple without the concentrator, then I tried it with, not sure for how long and I had to back down because it made me insane, like my relationships would melt down spectacularly.
I gather that sometimes your CD57 count is extra low while treating because your immune system attacks when you're herxing and used up those cells.
Also, I've been sick for 20 years so it's gonna go slower for me. It seems to work better than anything else though. Don't be discouraged folks. My case has been pretty bad. Babs too.
That's my update guys. Full steam ahead from now on though.
Good luck
-------------------- Lyme, Babesia, 18 years Posts: 9 | From California | Registered: Mar 2022
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kgg
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Yes, there are people on this thread who took no antibiotics. I took antibiotics off and on. Mostly off. It is not speedy. But you can get better.
I am so pleased for you that you are sticking with it!! Good job.
Thanks for the update!
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Phoiph
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Miriama,
As you know, consistency is crucial with mHBOT, so I am glad to hear you are committed to that now.
Good news regarding your question about not being able to continue to do antibiotics, and wondering if this will slow down your progress with mHBOT...
In my experience, people who are on antibiotics often take longer to experience results with mHBOT, as they will need to take the extra time/sessions to wean off of them slowly once they are more stable on mHBOT.
Also, as you mentioned, gut healing is a crucial factor for healing, which is difficult to achieve when on antibiotics.
I am optimistic with time you will get there; you've already experienced some positive changes which are good signs!
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kgg
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Well, I have had an interesting turn of events. I have been trying to treat my Lyme flare with herbals. Samento, Cryptolepsis and Banderol. I was supposed to titrate up to 20-30 drops twice a day. I have been slowly adding a drop every few days. I find I get incredibly irritable and my insomnia is worse. I am taking Skullcap for both of those symptoms. But it gets expensive, even as an herbal, to keep buying a bottle of this stuff.
I got up to 12 drops twice a day of all three. My hands hurt from arthritis pain that I am assuming is coming from the Samento. My irritability is off the charts. I can't stand myself! My poor family. And I have fallen twice from losing my balance. Heartburn and stomach upset.
Herbals are not the light weight treatment I thought they were. I actually tolerate antibiotics better! Ironic, isn't it? So much for Integrative medicines and taking herbals!
As I write this I am in my chamber because day 2 of being off my herbals, I started with intense burning neuropathy in the palms and fingers of my hands! I have never had this before. Aaarrrggghhhhh! Frustrating.
This is why I am soooo glad that I have a home chamber. And I know that I can get better with just hyperbarics. Those herbals were not cheap. Nor the appointment. Plus I have called them twice with messages and have never received a phone call back. Why did I do all of that?? Absolutely no clue. Dumb.
I should write a song about me and my chamber. ;-) I know I can get better in here! Speedy? No. But I got there once and I will get there again.
And after this, I will be developing a maintenance schedule so I do not get here again.
Thanks for listening to my fuss.
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Phoiph
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kgg,
So sorry to hear this!
Don't beat yourself up...it's human nature to want to try something novel and experiment :)
I am optimistic that mHBOT will get you back on track sooner than you think. Keep us posted.
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quote:Originally posted by Phoiph: This link came from Marie at Newtowne, demonstrating how someone with mobility issues can enter a chamber by using an elevated platform.
The 2'x 4' tables serving as a platform can be set at 3 different heights, and are available at Costco:
quote:Originally posted by Phoiph: This link came from Marie at Newtowne, demonstrating how someone with mobility issues can enter a chamber by using an elevated platform.
The 2'x 4' tables serving as a platform can be set at 3 different heights, and are available at Costco:
That was VERY helpful! Makes me want to consider building a custom platform with shelves underneath...
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kgg
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Good idea, OzarksGal! We ended up building a bunk bed or raised bed over our chamber. Our home is small since we downsized. We found we were lacking one more twin bed space when we had company. So my husband and friend built a cedar wood bed over the chamber. Of course, now that it is available they haven't come to visit. But at least it is there when needed and I still have my chamber up.
Posts: 1844 | From Maine | Registered: Jun 2004
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posted
Has anyone used mhbot to completely heal dysautonomia? (Severe neurological dysfunction). It was from Lyme and Bartonella, among a whole host of other co-infections. Thank you for any advice/opinions!
Also, does mhbot really get rid of the infections, or if you stop will they come back? Just wondering...I would like to be free of fear
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Phoiph
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Hi Lady T,
I will let others respond to your questions here since we have already discussed them via phone, and you know my story.
I truly hope hearing other's opinions and experiences will encourage you!
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kgg
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LadyT, simply put: Yes!! =)
To be free of fear, you need to start diving and quickly you will get used to diving. It will become so routine you will not be fearful.
It is natural to be fearful. But don't let that stop you from pursuing mild hyperbaric oxygen treatment. You can get better!!
I heard a woman talking about fear one time. Her advise: Do it afraid! I agree.
I don't use the word "cure" in my situation. My tick bites was when I was young and I wasn't diagnosed until I was in my 40's. But! I am sooo much better. I just retired from cut flower farming for three years. Putting in 10 hour days 7 days a week during the growing season. I could not have done that prior to using my chamber. I was almost bedridden when I purchased it.
I now use my chamber for maintenance. Since it is also antiaging, that is not a bad thing.
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posted
Thanks Phoiph and Kgg, I really appreciate you getting back to me.
That's really good news about the antibiotics. Do you think the antibiotic herbs also slow healing (by pushing Lyme into the cyst state, I presume)?
I would love to get more updates from other people and not only when they're over the hump, like, what does the half-way mark look like for folks?
I had some significant improvements just in the last few weeks.
Thanks
quote:Originally posted by Phoiph: Miriama,
As you know, consistency is crucial with mHBOT, so I am glad to hear you are committed to that now.
Good news regarding your question about not being able to continue to do antibiotics, and wondering if this will slow down your progress with mHBOT...
In my experience, people who are on antibiotics often take longer to experience results with mHBOT, as they will need to take the extra time/sessions to wean off of them slowly once they are more stable on mHBOT.
Also, as you mentioned, gut healing is a crucial factor for healing, which is difficult to achieve when on antibiotics.
I am optimistic with time you will get there; you've already experienced some positive changes which are good signs!
-------------------- Lyme, Babesia, 18 years Posts: 9 | From California | Registered: Mar 2022
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Phoiph
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quote:Originally posted by Miriama: Thanks Phoiph and Kgg, I really appreciate you getting back to me.
That's really good news about the antibiotics. Do you think the antibiotic herbs also slow healing...
My experience is that it is best to keep it simple and let mHBOT do its job in assisting your neuro-immune system to recover and take care of the pathogens.
The 3 most important components of the protocol are: mHBOT (consistently), gut/nerve healing diet, gentle, graded movement.
You can read kgg's recent experience (above) with herbs...it speaks volumes!
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kgg
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Miriama, you wrote: "I had some significant improvements just in the last few weeks."
My response is: Keep going!! Don't add to it. During the time I was diving, I did not feel as horrible as I did on herbals.
I wish more people were active on this post. But unfortunately, many have moved on to FB. Which I really dislike. But that is the times we are in. Hopefully, they will check in and respond.
I will say by mid treatment, I was over all better. But my stamina was not there. If I pushed it too much, I would relapse quickly. So I continued to dive.
Be patient. You will get there!
Posts: 1844 | From Maine | Registered: Jun 2004
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posted
Can any tell me what the mhbot protocol is for Parkinson's? And any other good things to do that you may have heard of that could help/heal? It will be greatly, greatly appreciated! Thank you!
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kgg
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Hi, LadyT! I did a quick search and yes, diving can help Parkinson's. One practitioner had a video saying that mild hyperbarics can be used with Parkinson's. Plus, I did a quick search about Lyme and Parkinson's. There is a thought that Parkinson's could be a complication of Lyme. So yes, diving would help since it helps us with Lyme.
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Phoiph
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It is usually treated with mild pressure, just like other neurological conditions. The neurologist/HBOT specialist I am in contact with frequently recommends a home chamber, treating daily.
I have personally witnessed an elderly gentleman with Parkinson's who required 24/7 care from his wife (and on the verge of going into assisted living), recover enough to use power tools in his woodshop and travel.
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posted
Thank you both KGG (for your research - that was very kind!) and phoiph for your answers! It was greatly appreciated and I am grateful!
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posted
Hello, I am going to be starting mbot soon, but my question is this: I have to take vitamin C (2000-3000mg per day). Is this dose high enough to interfere with mhbot? (I'm using it to treat lyme). I would appreciate any input! Thank you
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Phoiph
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That should be fine, Lady T. The possible concern is more with IV and mega-doses.
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Phioph, it's helpful to know that herbs aren't necessary or could even be an impediment because it's hard for me to get them down.
Gut and nerve healing diet?
And thanks a lot Kgg for letting me know what mid-treatment looked like. And especially about relapsing if you pushed too far.
Are you guys totally off treatment? Like, actually in remission? I gather from this people get somewhere between 2/3 to remissions. But, still, total remission is something that's hard for me to imagine.
-------------------- Lyme, Babesia, 18 years Posts: 9 | From California | Registered: Mar 2022
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Phioph, it's helpful to know that herbs aren't necessary or could even be an impediment because it's hard for me to get them down.
Gut and nerve healing diet?
And thanks a lot Kgg for letting me know what mid-treatment looked like. And especially about relapsing if you pushed too far.
Are you guys totally off treatment? Like, actually in remission? I gather from this people get somewhere between 2/3 to remissions. But, still, total remission is something that's hard for me to imagine.
-------------------- Lyme, Babesia, 18 years Posts: 9 | From California | Registered: Mar 2022
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Phoiph
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Miriama,
I'm not in remission, I've been well for 10 years, no medications, no restrictions (although I continue to stick to a clean, gluten-free diet).
There are many opinions on healing diets. In my experience, for example, a gut/nerve-healing diet would be very clean, organic, no processed foods, no gluten, very limited or no grains, limited goat dairy (no cow), and include lots of good fats/omega 3's, coconut oil, eggs, bone broth, avocados, soaked & dried nuts, quinoa, wild caught salmon and sardines, grass-fed beef, etc.
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kgg
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I wish I could say what Phoiph says, but my tick bites were when I was 8. I did not get diagnosed until I was in my 40's. And my family tends to have autoimmune health problems. For me using the word remission is probably more accurate. So I will always dive. And every few years I will do a month of antibiotics to suppress a flare. Lyme loves stress and my life it not with out it.
Prior to Covid I was much healthier. But after getting Omicron I seem to be struggling with keeping the Lyme in control. Which I guess is a known result of having Covid. Covid will make Lyme resurface.
But all in all, as a chronic Lyme patient, I am very happy with the investment into mHBO. And the incredible help it has been for my health.
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posted
Hi all~ It's been a LONG time! I saw a flurry of activity and I'm on vacation so I thought I'd post an update. I developed a TBI as a result of a combination of factors in March 2022~I bought a house which had mold and I became very ill (again!) from it. I lived there a total of 6 weeks. Simultaneously, it appears I also had a TBI from cold turkey withdrawal from a magnesium glycerinate that was discontinued. I rapidly went downhill, physically and mentally, resulting in 2 psychiatric hospitalizations and 4 meds to keep me from SI. As Phoiph knows, I gave away my chamber to a non-moldy (it was now contaminated and I was dry wrenching after using it in the house with mold. For the next 18 months, I lived in 3 different hotels (the last one for a year). Obviously I could have a chamber-lol. I did mHBOT at a clinic 6 times a week. I also did IV ozone until my veins wouldn't cooperate. And worked on slowly tapering off the meds. (as now my mold related symptoms were gone). It took me 15 months to taper off! My most difficult symptom that led me to be polydrugged was insomnia (like ZERO sleep some nights). After months and many $$ of testing more permanent housing, I finally moved into an apartment in December. I am so elated to be doing well! I don't have furniture yet, except for a bed, a camp chair and 2 TV trays (many pieces of furniture are either moldy smelling or too much off-gassing) but I'm slowly working on that. I've continued to dive-although right now I'm away for the month and not diving and doing ok. I will continue to dive when I get back but I think I will be able to cut down my dives per week to maybe 4/week to start. I hope everyone is doing great! I never thought I'd survive this last exposure but here I am and happy to be here. Thank you Phoiph and all for your ongoing support!
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Phoiph
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Hi carbokitty!!!
Welcome back! I've thought of you many times and hoped you were doing better. So glad to hear you are doing well now...you've been through so much...congrats!
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posted
Thanks Phoiph! It was not good for a long while. I, too, am glad to be back and doing well!
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kgg
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Carbokitty,so happy to hear that you are doing so much better!! Yay!! Those hard times are so challenging. Especially mold. But very happy for you that you are so much improved. Long may it continue!
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posted
Has anyone here heard of mhbot healing the brain from benzodiazepine induced brain/neurological damage?
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Phoiph
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Yes, I personally know someone who has.
Tapering off was a long, difficult journey, but she was determined, tenacious, and consistent with mHBOT.
She is now completely free of benzos and doing well.
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kgg
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I am way past due for an update.
I have owned a chamber for a long time. At least since 2006. I have been telling my healthy husband that he should get in. I never could convince him.
Recently, he finally agreed. I am starting him out VERY slowly. 20 minutes with oxygen flowing into the chamber. The first dive, he went in with right shoulder pain. 20 minutes later he came out with no pain!
Now this is the way it has always been over the many years of Lyme treatment. We buy a new mattress thinking my poor sleep is from it. He sleeps like a baby. I continue with insomnia. But I am so pleased for him that he had this initial reaction! We are older. I believe he will navigate retirement in a much healthier state from using the chamber. For this I am very grateful.
My adult son, who has psoriatic arthritis and on biologicals, gets in as well. He started diving a few months ago. Again, I started him really slowly. I did not want to discourage him with a big herx.
He reports less stiffness. But more importantly, he said he has much less brain fog. He can think clearly. I am grateful for these improvements since he never responded well to traditional Lyme and Bartonella treatments. Hindsight makes me wonder if he wasn't already autoimmune back then and no one realized it.
I continue to get back into diving after a three year break while I was cut flower farming. My autoimmune condition of Sjogren's seems to be not progressing. The arthritis in my fingers is much better when I am diving.
I continue to tweak my diving schedule. But for the most part, since I am just starting to dive for the first time in three years, I am diving at least 4-5 days a week. Trying to at least do back to back days.
I remain grateful to Phoiph for the encouragement to try diving one more time before I sell my chamber! I can't imagine my home without a chamber in it.
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Phoiph
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Thank you for that amazing update, kgg, and for all of your ongoing help and support on this thread!
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posted
Hello all smart people! I am wondering if besides doing mhbot, if anyone has heard of any treatment or protocol that has really helped with parkinson's. Something to stop progression and/or reverse symptoms. Any ideas are extremely appreciated and welcome!!!
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kgg
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I could have sworn that Dr. Perlmutter over a decade ago, said that Parkinson's was from Babesia. But I can't find it now. I vaguely recall an IV therapy he was using. Probably long gone.
I did find a page on his site that has a few articles on Parkinson's. He specifically states that a keto diet is helpful.
quote:Originally posted by kgg: I could have sworn that Dr. Perlmutter over a decade ago, said that Parkinson's was from Babesia. But I can't find it now. I vaguely recall an IV therapy he was using. Probably long gone.
I did find a page on his site that has a few articles on Parkinson's. He specifically states that a keto diet is helpful.
posted
Thanks Phioph and kgg for getting back to me with updates. Soldier on kgg, it can only get better.
Carbokitty, that sounds horrible!
So guys I was wondering, I have a friend with a TBI and I wanna get him a chamber, but his family is concerned because of his epilepsy. Of course, the risk is negligible at 1.3, but they would feel more comfortable with a hyperbaric specialist, an actual doctor. Someone on here mentioned they had someone who was working with them with their mHBOT. Does anyone know of anyone in Miami or Zoomland? Also, are these actual doctors?
To add to kgg's story about husband...my sister came home with long covid, after 2 hours treatment, she no longer had it.
And if you can't mention doctor's names, just PM me, thanks,
-------------------- Lyme, Babesia, 18 years Posts: 9 | From California | Registered: Mar 2022
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