This is topic Bartonella why we stay sick. in forum Medical Questions at LymeNet Flash.


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Posted by RC1 (Member # 31923) on :
 
Hey everyone. I haven't been around here much anymore. I wanted to share with you what's been going on with me.

I have been seeing Dr. M.

He is a Bartonella specialist. I wanted to share with you guys what went down. So I did *** mg of Rifampin with *** mg of Biaxin for 6 months, prior to that I did *** mg of Rifampin for 4 months. That's 10 months of treatment, plus prior to seeing Dr. M I did 3 1/2 years of hardcore abx.

I got to the point that I felt really good. Like 90% or so. Then I started to have bad days again that were turning into bad weeks. The Bart came back.

I am back in treatment again this time using Mycobutin. It has been rough. The herxing was way worse this time. Lots of psyche stuff. Mycobutin has good brain penetration.

If you have treated long and hard and are still sick, or you have the rare positive Bart test please don't ignore Bartonella. It's the reason many of us are still sick.

I really thought Dr. Burrascano was right in his guidelines, but I believe he's more talking about BLO and not true Bartonella. You can't have a long term Bart infection and treat it for three months...that treatment will fail. It takes a minimum of 6 months of high dose Bart specific antibiotics to get this behind you..

**edited identifying features of the LLMD and dosages, per LN rules**

[ 11-23-2015, 02:02 PM: Message edited by: Lymetoo ]
 
Posted by TNT (Member # 42349) on :
 
Hey RC, I'm sorry to hear about the relapse. I was wondering how you were doing. I just figured you were completely well by now, knowing how much progress you had been making.

How do you know it is the Bart? Did a follow-up Galaxy test show increasing numbers?

I can't remember, is Dr. M seeing many protozoans in your smears? Perhaps that is what is making it harder for you to get rid of Bart.

Much success to you!
 
Posted by jlcd1 (Member # 18138) on :
 
wow, i didn't know they were so different. Thanks!!
 
Posted by RC1 (Member # 31923) on :
 
Hi TNT,
I was still positive for antibodies after I had been off from treatment for 6 weeks or so. They usually go away with successful treatment. He thought that it was possible that they were from the past infection. That's why I didn't go right back into treatment at that point.

It was a bit of denial on my part too. I really wanted to be done.
I did treat the Protozoa for about 8 months. I'm still doing biofilm enzymes (Serrapeptase, Lumbrokinase).

These are the ideas on why I relapsed.
1) have a strain that Rifampin doesn't hit well
2) brain infection
3) became Rifampin resistant
4) possible Bartonella tumor/ cyst thing
5) it wasn't gone

So I am a treatment failure. The Mycobutin is hitting it like nothing I have done in the past. I will be treating with Mycobutin and Biaxin until I'm 2 months symptom free.
 
Posted by TNT (Member # 42349) on :
 
That's so discouraging. I'm sorry.

How is Mycobutin better than Rifampin?
 
Posted by SacredHeart (Member # 44733) on :
 
I was feeling almost one hundred after eight months of treatment. Did a lot of physical labor. Got hit with bart again, and obviously lyme.

Note to self, if it seems stupid, it is stupid....Don't do it.
 
Posted by LisaK (Member # 41384) on :
 
I have been trying to look up specific differences in sx for bart, babs and lyme. it is hard to find this info.

can you please post a list of your bart sx ??

when I tried to look it up I only see lists about 4-5 sx long. this can't be right, can it??
 
Posted by RC1 (Member # 31923) on :
 
There have been some PM's about my Mycobutin protocol. I am taking *** mg of Mycobutin with *** mgs of Biaxin.

The difference between Mycobutin and Rifampin is big. Mycobutin has a half life of almost three days and Rifampin is just a few hours. So there is constant killing. It's similar to the way Bicillin injections keep constant pressure on Lyme. That's why they work so well.

There is no symptom list that is accurate. There is so much overlap with these infections that I don't believe there could be accurate symptom lists. Bartonella causes small vessel disease and any symptom is possible with that.

For example, when I was on Rifampin I had really bad shortness of breath. Everyone thinks that that is a Babesia symptom, but mine resolved with Bart treatment.

***edited dosages .. please PM for info***

[ 11-23-2015, 02:04 PM: Message edited by: Lymetoo ]
 
Posted by micul (Member # 6314) on :
 
Thanks for posting that. Is that just once a day, or twice?
 
Posted by SacredHeart (Member # 44733) on :
 
Is mycobutin typically pulsed? I have heard pulsing on, off antibiotics is more successful.
 
Posted by RC1 (Member # 31923) on :
 
I am not pulsing it. Yes, they have found with Lyme that pulsing can be beneficial.
 
Posted by CD57 (Member # 11749) on :
 
Yay RC, I'm glad that you are finding something that works. The half life thing is important also.

The additional benefit to mycobutin vs rifampin is that it also does not trash hormones. yay! I HATE rifampin.
 
Posted by CD57 (Member # 11749) on :
 
BTW I completely agree with RC about bartonella (or parasites) being why we stay sick. Everyone needs to recognize this, LLMDs included. I really feel that they don't give it the attention it deserves.
 
Posted by Phoiph (Member # 41238) on :
 
RC1...

As someone who suffered from severe Bartonella for 8 years (and is now well), I'd like to add a possibility to your list of ideas as to why you relapsed:

6) Your immune system was not fully addressed and therefore your body was unable to fight the infections.

In my opinion, the multiple drug therapies may keep the infection and symptoms at bay, but they are no substitution for your immune system, and without reinforcing that, relapse may continue to be an issue...
 
Posted by SacredHeart (Member # 44733) on :
 
Phoiph,

How did you get your immune system up to speed?
 
Posted by Phoiph (Member # 41238) on :
 
Sacred Heart...

I was also considered an antibiotic "treatment failure"...and spent 5 years post-antibiotics completely homebound and increasingly dysfunctional.

My Bartonella symptoms were off the charts, both mentally and physically.

I became well through mild hyperbaric (home chamber), gut-healing diet, and graded activity/exercise. It was a long process with many ups and downs, but as my immune system began to gain strength, the infections and symptoms began to fall away.

You can read more about my experience and others who are having success on this thread:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201

I learned the hard way that "bug chasing" was akin to "tail chasing"...and it is really all about the restoring the integrity of the immune system.
 
Posted by SacredHeart (Member # 44733) on :
 
Cool, yes, I think we have talked about mild hyper before. Could you post me the link directly, or pm me with the info so I can order one when I have the cash?

God is taking care of me. I good job just fell into my lap, and I have just enough energy to do it.
 
Posted by SacredHeart (Member # 44733) on :
 
Phoiph do you know anyone that has had bart and lyme, used the chamber, and gotten well?

I hear conflicting information about bartonella. Thanks.
 
Posted by Phoiph (Member # 41238) on :
 
Yes...as I mentioned in my previous post, I had severe Bartonella...both psychiatric and physical manifestations for 8 years.

I would like to hear your "conflicting bartonella" information, but think we should move the specific discussion to the mild hyperbaric thread (as I don't want to hijack RC1's thread):

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201
 
Posted by SacredHeart (Member # 44733) on :
 
Got ya. Just saw you wrote me back here. Don't want to kill the thread. Sorry. [Smile]
 
Posted by TNT (Member # 42349) on :
 
I wish the link with the Dr. M pdf on hbot possibly feeding bartonella would still be online...(presentation was in 2012). I would post that link, but, unfortunately, he must have taken it down since it was copyrighted.

He discusses the possibility of HBOT feeding Bart. He says that the oxygen sensitivity of bart is not known and the biology suggests it may be resistant to HBOT.

He suggests that until the oxygen susceptibility of the patient's pathogens is known, the use of HBOT should be used very carefully "to avoid causing neurological complications."

That was my experience with HBOT. So, I will not use it again until the infections are under control. Then, it will be very useful I'm sure.
 
Posted by SacredHeart (Member # 44733) on :
 
TNT you used HBOT, you have BART, and things got bad for you?
 
Posted by smokingsky (Member # 37863) on :
 
Phoiph, could you describe your psychiatric and physical Bart symptoms?
 
Posted by TNT (Member # 42349) on :
 
SacredHeart,

Yes, I have Bart, BLO, and protozoan infections (and borrelia). The Bart, protozoan, and lyme infections are lab-verified (certified labs). The BLO is clinical-probably chronic brucellosis.

Excited by the buzz here at lymenet, I started doing mHBOT with supplemental O2 on a daily basis. I did over 130 daily dives and only got considerably worse during that time.

It definitely seems like the oxygen fed my infections. That's what I would say happened. You can read my posts during that time on the thread that Phoiph posted above.

I'm not knocking HBOT. I think it can be extremely helpful-especially for repair. But, I personally feel timing is the key for most patients with coinfections.
 
Posted by TNT (Member # 42349) on :
 
RC, has Dr. M said anything to you about liposomal Gentamycin? He was hoping to have that available sometime in the future. Perhaps that would be a game-changer for you if available.

Also, I would look into getting a rife machine. I have friends that have been lucky enough to have been cured of cancer, and those with lyme and coinfections that are doing very well that have used it. Unfortunately, my gains have been modest.
 
Posted by RC1 (Member # 31923) on :
 
Dr. M has researched HBOT extensively he has a HBOT facility at his office. He has found that it does nothing to get the load down at all. As TNT said it's good for healing.

Phoiph, did you have a positive Bartonella test?

Bartonella is an extremely hard infection to get rid of and is extremely immune suppressive. There isn't a way to make it stop supressing your immune system, that's why it has to go.
 
Posted by Phoiph (Member # 41238) on :
 
RC1...Yes, I had a positive Bartonella, Babesia, and Lyme (Garinii; highly neurological European strain) test, and was hugely symptomatic for 8 years.

I attempted to treat those 3 infections via IV and oral antibiotics, anti-microbials, and many other therapies for a year, at which point I was more ill than before I started.

I then became homebound for 5 years, and too chemically sensitive to continue drug, herbal, or nutriceutical therapies (although I continued to attempt many, including homeopathy, without improvement). I was also only able to tolerate 6 foods for those 5 years after antibiotic therapy, as it further compromised my already serious gut issues.

After drug therapy, I still tested positive for all 3 infections (and now with many more viral) and was on a continual downward spiral. I knew without a doubt that I was dying.

Smokingsky...my symptoms would take up pages, but I will try to summarize:

24/7 searing, burning head to toe nerve pain which increased whenever I tried to stop moving, severe agitation (paced continually, day and night), inability to sleep (ever), internal vibrating, discolored extremities, numbness, constant head pain, sensory sensitivity and processing issues (light, sound, touch motion, etc.) to the point of having autistic-like behavior and responses, chronic gastritis and severe gut inflammation, dementia-like cognitive decline, continual irritability and rage, black-hole depression, state of terror and panic 24/7, night seizures and hallucinations...etc., etc., etc....

I was told by many LLMD's that I was the worst case they had seen; an antibiotic and treatment failure, that there was nothing more they could do, and that "I needed a miracle".

That "miracle" came in the form of mHBOT, but it was a rocky road to recovery; it was a few months of daily use before I started to first notice shifts, then later, improvements. It was a 2 step forward, one step back process, and I never knew (or believed) that it would eventually get me totally well, med-free, but it did, along with a gut/nerve healing diet, and increasing, graded activity.

I have learned a lot over the past few years through helping other people develop mHBOT protocols (both on and off of LymeNet). It has been my observation and experience that it is a very powerful therapy (often underestimated) and for those who have difficulty detoxifying (i.e., most people with chronic illness), it is best to start VERY slowly and strategically, and with as simple a protocol as possible, so that the body is not overwhelmed by too many competing therapies.

Also, mHBOT is a commitment; frequency, consistency, and number of treatments over time is key...
 
Posted by RC1 (Member # 31923) on :
 
Phoiph, given all of your food issues and MCS I wonder if you were living in mold...It makes every symptom 10x worse. I lived through mold illness and getting rid of the mold made a huge difference for me.

Some of the mold doctors use oxygen as a big part of their treatment plan. I'm just wondering if that's why the HBOT helped you.

Because my doctor is so knowledgeable in HBOT and he is a Batonella specialist and says that HBOT doesn't help with the infections makes me think that you had something else going on.

No disrespect intended...just sharing my thoughts.
 
Posted by Phoiph (Member # 41238) on :
 
RC1...

I appreciate your thoughts...but I had been living in the same house which I built (very dry climate, no water intrusion) for 12 years prior to becoming ill (now 21 years total).

The MCS began only after I became very toxic with the drug treatment, which also ruined my gut and overtaxed my liver (raised enzymes).

Even if mold were part of the picture, it doesn't change the fact that I still had Bartonella, Babesia, and Lyme, plus multiple high viral loads immediately prior to starting mHBOT, and did no other treatments 5 years prior or during (except homeopathy), so having mold added to the list would have been an even greater testament to the effectiveness of mHBOT.

With all due respect, I am not sure of how your doctor is using HBOT; but I would suspect it is not the same protocol I used and/or others are using who are making gains.

Many clinicians use higher pressures over shorter periods of time, and with less frequency. Patients are also usually on high levels of drug interventions in combination, which as I mentioned, is not at all what I have observed to be successful. On the contrary!

I encourage you to read the mild hyperbaric thread (all 10 pages, if possible) which I referenced above, and read about others' experiences (toward the end of the 10 pages).

It is not necessarily all about "direct kill" with mHBOT, but about rebuilding a strong immune system and an environment where pathogens cannot thrive. You may know that Bartonella is not usually an issue (i.e., is a self-limiting, mild illness or asymptomatic illness)in someone with an intact immune system. It is when the immune system becomes compromised that these infections take over; that is their strategy, along with keeping the body in a hypoxic condition, so that cells can't function properly. Then it has its way with you.

mHBOT treats many chronic illnesses by treating the common denominators that keep the body and immune system from doing it's job (e.g., via increasing cellular metabolism so nutrition can enter and toxins can leave, releasing stem cells, increasing white blood cell count, reversing hypoperfusion and returning circulation to tissues, reducing inflammation, creating free radicals that attack pathogens, while increasing production of the body's natural antioxidants, etc., etc., etc.

A good resource to learn more about mHBOT is "The Oxygen Revolution", by Dr. Paul Harch. The before and after SPECT scans are very compelling...
 
Posted by Blackstone (Member # 9453) on :
 
RC1 - I've not had the chance to speak with Dr. M as of yet (if we are thinking of the same Dr. M). Are you aware of any other drugs he suggests for effective Bartonella treatment?

Rifabutin (and especially, Rifampin) interact with many, many medications in a very negative way. Rifampin is pretty much the strongest C450 enzyme group inducer that we know of, which means any drugs that rely on this pathway (a ton of them) will be excreted from the system to the point of making them ineffectual. Rifabutin is a weaker inducer than Rifampin, but it is still a major effect and thus restricts the use of this drug classification for many patients. So finding an effective alternative would be paramount.

From your post it seems that Dr. M / Galaxy focuses on Bartonella itself, not BLO? How confident does he feel Galaxy tests can be in diagnosing Bartonella versus BLO, and has he been able to identify Bartonella species through his diagnostics that are outside of the standard (henselae, quintana etc.. )?

Thanks. I shall likely make contact with Dr. M relatively soon; I've been interested in Galaxy for some time.
 
Posted by dbpei (Member # 33574) on :
 
This is an interesting thread to me. I have never tested positive for bart, but I am showing antibodies (IGG and IGM) for brucellosis, which is closely related. Since being treated with herbal antimicrobials, my antibodies are increasing. So I know it is doing something...

When first diagnosed, I was put on rifabutin and minocycline. I changed doctors too early in my treatment and wonder if I had stayed on these longer, I would be better today. I felt much worse when these were changed to rifampin and doxy (which now I am convinced I was having a possible allergic reaction to - as opposed to herxing).
 
Posted by TNT (Member # 42349) on :
 
As with Blackstone, I have wondered the same thing about BLO. I think Dr. M is brilliant in many ways, and Galaxy has Bart testing near to perfected concerning the strains known/what they test for.

But my personal feeling is that even Galaxy (and Dr. M) has yet to understand the huge impact of these bartonella-LIKE organisms. I fully agree with Dr. Burrascano that this group of pathogens has a HUGE part to play in why we remain sick. The trouble is, it's the invisible pathogen that we have no way of testing for, except for, perhaps, looking at a general gram stain/smear. I'm not sure if a stain would detect an intracellular BLO or not. This is why a shotgun approach is often needed.
 
Posted by Phoiph (Member # 41238) on :
 
For what it is worth, Fry labs also detected BLO's in my blood smear...
 
Posted by RC1 (Member # 31923) on :
 
I would imagine treatment of the BLO is the same as treating the real thing. Burrascano just says to treat BLO for up to three months. Where as a true Bartonella infection treatment is 6 months with high dose Bartonella specific antibiotics,

It seems that BLO is much easier to clear than true Bartonella. As far as treatment options I'm not completely aware of other protocols he might use if a person doesn't want to take Rifampin or Mycobutin. He does use Clindamycin with Doxy though. I don't know the dosages for those.

I believe that the Galaxy triple draw is 90% accurate. If you have been on abx for a long time you may have a hard time getting a culture though. I don't know if that 90% goes down with long term abx use.

I believe they are only testing for the two strains (Dr. M may have only tested me for 2 IDK) but there is cross reaction with those two with each other so I would imagine there would cross reaction with the others too.

TNT I think you are underestimating true Bartonella and what a beast it is. I believe the ones that get better from a few months of Bart treatment are probably dealing with BLO and not true Bart.
 
Posted by A.G. (Member # 44713) on :
 
Does IgG positive through Igenex "count" as positive? Being that it is IgG (and was a couple years ago).
 
Posted by surprise (Member # 34987) on :
 
Yes, A.G. that is a positive Bartonella test. I also got a positive Bart H test through Igenex.

I don't have a magic formula for Bart eradication. I've taken just about every antibiotic, herb, tincture available for Bart.

Levaquin was very helpful for me personally.

I don't say I am 'cured', I was infected for decades, but I've been off treatment for awhile now, and I am better/ held gains.

But I require certain lifestyle to stay okay. No to toxic people/ situations/ obvious stress relations, because I've had that pull me down.

Exercise, good low inflamm. diet, certain supplements help, a few other odds and ends, a sleep pill I admit.

But better and off treatment/ acceptance/ did the best I could/ okay and getting better as more time passes/ keep working on health.
 
Posted by oceangirlSA (Member # 40873) on :
 
Hi RC1

Thank you for posting your treatment update. I have thought of you alot since I started my Bartonella treatment.

I have positive antibodies for Bartonella Henselae through Quest, and started treatement for Bart in January. I was on Rifampin, Biaxin and Doxy and then changed to Minocycline.

The combination was working well for the Bart, although not for my Lyme because Biaxin and tetracyclines were made ineffective for the Lyme, and so my Lyme symptoms are much worse now.

I had to stop all a month ago because my gut packed up on me, and all my Bart symptoms have come back. Its so depressing because the headaches debilitate me.

I have to heal my gut now and am taking herbals for Lyme and Bart, but am pleased to hear the Mycobutin is working better for you. That is helpfulfor me to know for my own situation as I hate Rifampin too.

Please keep us posted on your progress with the Mycobutin!
 
Posted by rowingmom (Member # 41213) on :
 
Asymptomatic, negative testing babesia or babesia-like-organism was the reason K couldn't heal from bartonella. And I mean we hit bartonella with everything. Various combos of biaxin, rifampin, minocycline, plaquinel, malarone, tindamax, azithromycin, Buhner's full bartonella protocol.

Not until we started treating with babesia herbs did she get to full recovery.
 
Posted by TNT (Member # 42349) on :
 
How's it going RC? Are you well enough to give us an update?
 
Posted by RC1 (Member # 31923) on :
 
Hi TNT,

Oh boy...what a rough time I had on the Mycobutin. It completely trashed my adrenals. Rifampin makes you process your own cortisol 2x as fast and Mycobutin is even worse in that regard.

I was going into adrenal crisis on a regular basis. I was on hydrocortisone but wasn't on enough. I was told to do 30 mg a day...I was doing 40 mg...but to feel normal I needed like 60 mgs. The treatment was a living hell for me. But I did do the full protocol.

That treatment certainly made the weaknesses in my composition very clear...low adrenal function.

I have decided to no longer see Dr. M. I have done his whole bag of tricks and I still have Bartonella. My load is lower, I'm feeling pretty good. I'm back with my old LLMD and added in Septra because I was still having morning foot pain some hip and knee pain too...well I herxed...

I think I may be one of the people that needs to stay on abx indefinitely. I'm willing to do that to have quality of life.
 
Posted by TNT (Member # 42349) on :
 
Hey RC! Wow, you've been through the mill. I'm sorry to hear about your adrenals crashing. I wonder if some herbal adaptogens (like ashwaghanda, eluethro, rhodiola, etc.) would be a helpful adjunct to the cortisol to help them rebuild?

Dr. M is pretty bright, but it is probably best now that you work with your previous LLMD... he'll probably be more open-minded (and cheaper). Not to mention closer.

Have you ever been tested for Brucellosis?

Have you ever tried Rife?

Just some suggestions. I know you'll have a plan. Keep fighting.

Thanks for the update.

Check out the microscopy thread if you get a chance. It's a pretty awesome thread!
 
Posted by Phoiph (Member # 41238) on :
 
"I think I may be one of the people that needs to stay on abx indefinitely. I'm willing to do that to have quality of life."

Before committing to that idea, I do hope you'll read the mild hyperbaric thread (all pages):

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201

You can read about others who were able to get off their antibiotics and are living quality lives now...
 
Posted by TNT (Member # 42349) on :
 
Phoiph, I think mHBOT has definite healing and rebuilding properties.

The only thing is, I know more people who have stopped it because it made them worse, than people it made better. You claim there are people who have effectively been cured. But, you are the only one on Lymenet that I read that it has actually happened to (Peiomomma is the only other one close). I wish some of these other people would post their success stories as you have. I follow the Mild HBOT thread frequently. There are no cures but yours. A few are functional, but others are still really struggling even after hundreds of dives.

I appreciate you promoting it, but RC has already stated that her very experienced Bart/hyperbaric doc said it does nothing to bring the load down; but, infers that it might in fact feed it.

I think every person should have the opportunity to give it a fair trial. So, your efforts are greatly appreciated. I think that RC's doc would have recommended that to her if he thought it would have really helped her. He has two chambers in his practice, and probably has hundreds of patients using them under his care.

I personally think that the data would be out by now if it was there.

These are just my thoughts and I hope you don't take this as a personal attack. You are doing a great job promoting this modality and helping others with it. I just wish there was more evidence that it is as curative as your case.
 
Posted by Phoiph (Member # 41238) on :
 
TNT...

I appreciate your response.

I've been working with many people for the past 3 years now who do and do not post on LymeNet, and I can guarantee you that I would not be spending hours per day of my time as a "well person" educating people about mild hyperbaric if it wasn't giving people their lives back. What would be the point? I don't ask for compensation.

All I asked was for the poster to read the thread before deciding there was only one path.

I have learned that the success of mild hyperbaric depends on how it is utilized; many people and doctors don't understand this...which is why education is so important. I contact each person I work with personally to make sure they understand this and the commitment it involves.

As for the LymeNet thread...here's a sample of the latest update from a user that has been committed to the treatment (not Peimomma). People can decide for themselves is this is a path worth exploring or not:

"...Hi every one, time for an update! As of yesterday I have reached 600 hours of mHBOT! My health continues to improve, albeit very slowly and with many ups and downs.

Taking some notes every day over the past two years of hbot has really helped to show my improvement. Otherwise, you get up every day and think "My head still hurts, darn that knee is sore again, etc." Overall, the intensity of my symptoms and number of symptoms have reduced. I am leading a very busy and full life.

Its interesting that the topic of emotions came up, as I have been in the THICK of working on emotional issues these past few months. I feel I was holding a lot of emotional trauma and energy in my body. I am working with some great practitioners (EFT, acupuncture, etc) and it has been extremely helpful.

I can tell you that the chamber can be a good, safe place to explore emotions, understand beliefs that are keeping you stuck, and have a good wailing cry!

Overall, mHBOT is my base treatment, along with the GAPS diet and now the energy/acupuncture work. I find the more I work on my gut and really nutrient dense eating, the more positive "bumps" I get. I am not on any herbs or abx specifically for Lyme, but I am using a little bit of Biocidin herbal tincture to try and help my gut out.

I feel I have severe dysbiosis after years of abuse and neglect from 4+ years of abx, birth control pills, stress, sugar, etc.

Its been a long road for me, but I am living and enjoying my life. Prior to finding hbot, I was desperate and had a lot of suicidal ideation because I couldn't see a way out of this mess. And believe me, I spent a lot of money and saw the "best" doc for two years.

I may not be cured, but I am healing. My body still has more work to do and I plan on supporting it any way I can.

We've got quite the group diving now, and I look forward to seeing everyone's progress. We are all going to improve and have many ups/downs at different rates. Try to listen to your body and support yourself.

Hugs to all you brave souls...."

 
Posted by TNT (Member # 42349) on :
 
Thanks Phoiph. I agree that people should have as much info as possible to decide for themselves. Absolutely. And your commitment is admirable and selfless.

I'm just saying that you are the only one I have heard of that has been cured. Mbdq is making progress. That's GREAT! But, with almost 2 years of diving and the GAPS diet to still have severe dysbiosis, my opinion is that something is still not being addressed.

Without looking back at Mbdq's earlier posts, I do not remember if she was working before starting mHBOT. If not, she is making great strides. But, if she was, how much improvement is she realistically gaining?

Either way, Mbdq should continue with it as she has gained satisfaction and enjoyment of life again. Definitely worth it. But, that's not my point. Even RC is "feeling pretty good."

I think there are still many factors unknown with HBOT and mHBOT and open discussion and full disclosure is paramount for those considering using it. Reading the mHBOT thread is a good starting place.

Speaking from experience, it's not a panacea for chronic lyme disease.
 
Posted by TNT (Member # 42349) on :
 
quote:
Originally posted by TNT:
Speaking from experience, it's not a panacea for chronic lyme disease.

I take that back. If it was ONLY borrelia, I personally think it would be.
 
Posted by Phoiph (Member # 41238) on :
 
True healing is a journey, and it takes time and commitment

The time it takes to progress with mHBOT can be affected by individual variables (which you and I have discussed), one of which is how long a person has been on (and continues to be on) multiple drug therapies, and how well they are able to move these toxins out of their bodies. It these cases, it is a process involving "steps".

From this "out of context" post, it may be difficult to truly appreciate where Mdbq started. I would encourage you to PM her and others personally, so you can get a better picture of their background, progress, and experience.

I would also encourage you to post your sentiments on the mild hyperbaric thread so you can hear from others.

By the way, please note that I use the word "cured" only for myself; as I choose to claim it...I don't pronounce others.
 


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