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» LymeNet Flash » Questions and Discussion » Medical Questions » Hello after a long absence-beyond frustrated

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Author Topic: Hello after a long absence-beyond frustrated
beaches
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Hi everyone,

Contrary to what some believe, people don't stop posting here because things are going well. In my case, I stopped posting because things aren't. I am beyond weary and frustrated.

DD was bit in '04 and went undiagnosed til '08. Doc J didn't get her better, nor did H or B who refused to rx iv abx despite + tests. We consulted with C and she has been under the care of G, B psych and K neuro past few years. So we've seen the so-called best and are currently with the best of the best.

She's had a couple of good years-relatively speaking. And she's had a good week or two or three and good days here and there. But mostly, these years have been horrendous for her to say the least. She has missed all her teen years and her 20's are passing her by. My heart is broken and I die a little bit more every day.

She has been on multiple oral and iv abx combos over the years. IV rocephin and zith for a year gave her her life back but as soon as she came off the abx, she deteriorated. Since then she has tried that combo again to no avail and tried the woo hoo new combo that supposedly gets rid of the beast once and for all. That was a huge fail.

She's been on herbals, done detox, taken anti parasitics, gone gluten free, dairy free, went on low histamine diet, done acupuncture, done ivig which she couldn't tolerate (CIDP) and had to switch to sub-q-which she can't tolerate either, iv vitamins and glutathione, oral vitamins and probably other things I am forgetting.

She is in bad shape-bedbound-looks and feels god-awful. I wish there was a place that could provide her with iv nutrition, good meals, PT, OT, other therapy as needed, socialization, medical care. I do the best I can-provide healthy food, a good, clean home, supportive environment and I research constantly. But I am weary if it all after so many years. I have my own serious health issues that have constantly taken a back seat to my kids' needs (yes I have another one with health problems but thankfully doing OK now thank God)

I am at the point that I am ready to take her anywhere. We looked into the Germany clinic that heats you up to 107 degrees to kill the lyme. Intuitively I know this is not a good idea for her. Asked the docs-did not get positive feedback on this option.

Does anyone have positive feedback from any other place? I am willing to do anything but my God we certainly can't afford to go on a wild goose chase. We're lucky we still have a roof over our heads at this point!

Thanks for listening and for any novel ideas you might have.

** edited to remove negative comments about LLMDs **

[ 09-14-2017, 03:19 PM: Message edited by: sixgoofykids ]

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Brussels
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OMG...

Have you tried any sort of electrodermal tests or ART type of tests?

Paracelsus type of treatment? with homepathics, nosodes etc?

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Bartenderbonnie
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So sorry beaches,

I just read Ally Hilfiger's book Bite Me from the library.
Your story of treatment and physicians are very similar.

You must read it.

For the life of me, I can't remember the final chapters of her treatment that finally worked for her. I have poor short term memory.

Ally is now in remission, has a 2 year old daughter, and this past summer got married.

Hope you find some answers. You both have been through so much.

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sixgoofykids
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I could never get off super-heavy abx (even if I stayed on herbs or reduced abx) and stay somewhat functional.

At that point, I went to Germany for photon treatment. It gave me my life back.

I still had to treat parasites, metals, gut, mold, etc., but the photons got rid of the lead suit I had been wearing for years.

it's not helpful for viruses, IMO, so if her viral load is high, it might not be the answer, but it works better than anything I've used on borrelia.

I have not had to take anything for borrelia or other Lyme infections in 8 years.

You also might want to check for mold in your home.

Good luck, I hope you find something that helps.

--------------------
sixgoofykids.blogspot.com

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lapis29
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quote:
Originally posted by sixgoofykids:


At that point, I went to Germany for photon treatment. It gave me my life back.

interesting

seems most info on that on the net is from 2008 or 9

how much did it cost you?

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dbpei
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Welcome back, beaches. You have been missed by many here. I am so very sorry to hear about your daughter's struggle and your own. I don't have any answers but just wanted you to know that I respect you a lot and your daughter must feel so much more hopeful having a mom like you in her court.

I hope you will get some good guidance here that will lead you in the right direction. You have to do so much research and also listen to your gut instincts when it comes to this awful illness.

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sixgoofykids
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quote:
Originally posted by lapis29:


seems most info on that on the net is from 2008 or 9

how much did it cost you?

Yes, true. I went in 2008. It's not a stand alone treatment, but it works on borrelia. People didn't listen to those of us who went because the ones who didn't continue treatment at home or who had a heavy viral load didn't get better.

I also got a lot of personal attacks here on the board, on Facebook, and on my blog accusing me of being a liar about having been sick to begin with. There was an effort to discredit me and others who went by trolls who cast enough doubt that people in general didn't believe us. I can't exaggerate this. I received a Facebook message as recently as 2016 saying that it was great to finally have a face to put with my name so now he knows what the liar looks like.

However, there are still several more current threads on photon treatment, which is what we did. People now mostly use the PE1 at home for this. It can be done, but I think it's a bit slower without the stronger vials Dr. W uses and it needs to be slower without the IV detox.

I think the IV detox I got in Germany also helped me detox the mold I had been exposed to.

My total trip cost was less than $15,000 (probably more like $13,000) and that included the $8000 Bionic 880, travel to Germany for three weeks, a rental car that I shared with other patients, an apt. I shared with another patient, groceries while there, a minimum of one meal out per day at a sit-down restaurant, sight seeing once I was feeling better, the doctor and pharmacy bills.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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The PE1 that people use here in the states costs $1700

--------------------
sixgoofykids.blogspot.com

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lapis29
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thanks, what was in the IV detox you got? any idea?

and yes, people can be viscious, its unreal.

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sixgoofykids
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People are vicious .... being a moderator and seeing things, I actually believe trolls are organized and/or paid to debunk all things alternative on the internet. But, I have no proof. Anyway ...

I know there were minerals in it including zinc and magnesium. There were also homeopathics in it, but I am not well-versed enough in homeopathics to know what they were.

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sixgoofykids.blogspot.com

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lapis29
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ok, thanks for your help
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anuta
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Dr W used traumel, solidago ( renal support), lymphomiosot and hepatic support homeopathic IVs for support
He muscle tests it for each patient

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sixgoofykids
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quote:
Originally posted by anuta:
Dr W used traumel, solidago ( renal support), lymphomiosot and hepatic support homeopathic IVs for support
He muscle tests it for each patient

I know solidago was in mine ... I couldn't remember the name. I don't know what else. When I went he wasn't muscle testing it for each patient yet. Mine also had minerals ... I remember buying them from the pharmacy.

He was changing things all the time looking for what worked best!

--------------------
sixgoofykids.blogspot.com

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Brussels
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I do agree with Six.

For me too, it worked for Borrelia well.
And for my daughter. Incredibly fast.

I used the PE1, home treatment, while in waiting-list to see dr. W.

when my appointment finally arrived, I canceled it, because we both had no more symptoms!

Anuta is working with Babesia nosodes and the PE1 now, and she's having some results, it seems. Finally.

Only time will tell if it works for Babs too, but I'm crossing my fingers!!

but with babs, it seems it is not a stand alone treatment either.

It's such a smart pathogen, specially when one probably has more than one strain...


With Borrelia, I never bumped into anything better so far, for Bb.

I used simultaneously loads of homeopathics for cleansing and support, such as Lymphomyosot, Hepar comp, Solidago comp, Coenzyme compositum, Ubichinon compos (CoQ10 support) etc.

All homeopathic + herbs and supplements also for cleansing and support (like most people doing dr. K's treatments do).

But the ONLY anti-borrelial agent were nosodes through infrared. That is what was impressive. No combos!

And that did the anti-microbial part MUCH better than all Buhner's Borrelia herbs together with Cowden and dr. K's rizols / garlic etc, plus Chinese herbs on top, and microcurrent with Rife frequencies, or zappers.

Nothing for me is comparable to infrared + photons for Bb, in terms of depth and efficiency.

It was just too fast to be true.

And you buy the device once, the nosodes just once, and still may use it for years on you or family IN case they relapse.

It still gives me peace of mind.

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Rumigirl
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I wonder if it works as well for people who have had Bb for their whole life with uncountable known tick bites and many co-infections the same (me)?

Also, if it helps people as much with severe neurolgical and other damage, which the nosodes can't repair.

I also have mold issues, but am still living in mold (arghh!) due to being way too sick to address it or move! We would have to move somewhere far away to be able to afford to move. Plus, I have no strength with which to deal with finding a place and moving. Bad, I know.

Plus, I do have viruses. Not sure how active they are now, but maybe, multiple viruses.

Plus, the co-infections are very active and bad. Whew!

Thank you, six, for the information!! How you've been targeted is disgusting and scary!

Thank you, Brussels, too.

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Rumigirl
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beaches,

I am so sorry to hear of you and your daughter's struggles! It's bad enough for us adults, but for kids/adolescents/young people to have to suffer like this for so long is unconscionable.

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sixgoofykids
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Rumigirl, I had Lyme Disease since I was very young. I had multiple tick bites throughout my childhood. I had fatigue and fibromyalgia all through high school and college.

I had bad cognitive issues. Once I got better, I played games to rebuild my mind. I played Words with Friends to get back word recall. I studied Pilates and became an instructor, so I was learning something new that was both from books and physically. I also had to learn to recognize faces of those who came into the studio.

I had severe cognitive issues and am recovered, but it was a lot of work to rebuild my brain.

--------------------
sixgoofykids.blogspot.com

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Brussels
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I didn't have Bb for my whole life. I had it for 4 years.

But now, I can tell you, I'm bitten so often by ticks, that I wonder...

I had my 10th bite this year 2017 just yesterday. And I felt it was contaminated, this time.

I felt anxiety from it. It stayed just a couple of hours, it was a nymph, but it made me feel 'crazy'.

I only took one homeopathic substance called Staphysangria.

Well, after the 2nd dose, I felt relaxing, then about 2 hours later, I was so relaxed that I do think it worked.

So, I've been bitten so often, and statistics say 25% of ticks in my region have Bb.

I get more than 4 bites a year, so statistically, I've been infected by Bb every year, 100% sure.

This year, 10 bites, so far. And the year is not finished.

So definitively, something happened to me, as though my body got less prone to fall ill with newly injected Bb or so?

I was fully neuro-arthritic lyme, full of food allergies, extreme fatigue (to the point of struggling to keep sitting up).

I had ALL coinfections my lyme doctor could test.
Except for TBE.

My daughter had all of them. Including TBE.
But she was not as chronic as I was (only 3 years, on and off). She is also often bitten.

Biophotons and nosodes definitively helped us. Maybe not only that, but I still feel safer having the device and the nosodes in my cupboard.

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WPinVA
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Gosh I am so sorry and just had to say that you are absolutely an incredible mom.

I'm not there yet - this has been a long-term struggle. But something that turned out to be very important for me was mold in the home. Mold doesn't have to be obvious to be there or to be a problem, and it can keep you from getting well.

We would like to move, but in the meantime, are trying to get our home as clean as we can. It's not perfect but I'm improving.

Also, just recently started chelation and I'm hopeful that will help too.

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TNT
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SO SORRY to hear this Beaches. You ARE a WONDERFUL MOM!

Your daughter can get well.

Please look into BVT (Bee Venom Therapy). I know, it seems anti-intuitive, sounds crazy, and is too cheap to really sound like a valid treatment option, but it is helping SO many!

Look up Ellie Lobel. She was given up for dead, but is now running all over the country helping people with this therapy.

"bluelyme" and myself have come back from the dead too! It is the best thing I have done!

If you don't trust our word or experiences, look up Eva Sapi's work on bee venom. She has done some amazing lab testing with bee venom and Lyme and has found it to be as good-OR BETTER- than antibiotics. I personally have actually found it to make the antibiotics effective. Before BVT, ABX were doing very little for me, but I am now as good as I have been in 5 years! So, BVT with ABX have been the key for me. It's so easy and so cheap it seems like a hoax. Most people are able to wean off their ABX completely and some people find BVT a stand-alone treatment when everything else has failed.

There are plenty of Pub-Med and various other articles about the antimicrobial benefits of bee venom or it's most studied constituent- Melittin.

I don't have time to list them all or find the studies for you, but I learned from the literature that bee venom (or Melittin) is stronger than Fluconazole for fungus, very potent against Borrelia (see 1997 Rocky Mountain Labs' paper on that), potent activity against biofilm, against L-forms, against gram-positives, viruses, and about 50% effectiveness against gram-negatives. I may have missed something.

But, you get the drift.

http://www.abc15.com/news/state/is-bee-venom-therapy-a-cure-to-lyme-disease-a-valley-resident-thinks-so

http://www.lyme-beevenom.com/

[ 09-18-2017, 10:09 AM: Message edited by: TNT ]

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Brussels
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Definitively bee venom (dr. K was preaching about that many many years ago, much before Ellie Lobel had been bitten).

Another kind of very good product is CBD oil.
CBD oil with special blueprints

Both treatments deal with more than infection, more widespectrum treatment against inflammation...

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TNT
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BVT also helps with pain (ironic isn't it?).
It really helps take away or at least minimizes the overall nerve, bone, joint, and body pain of chronic Lyme disease. As for the sting sites themselves, I usually feel nothing if I ice my back long enough before I sting. Even if I do feel it (or get an errant sting from a loose bee), it only burns for about 30 seconds until what I call the good feeling kicks in.

And it helps balance the TH1 and TH2 immune response.... which gets so out of balance when we are chronically infected.

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TNT
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quote:
Originally posted by Brussels:
Definitively bee venom (dr. K was preaching about that many many years ago, much before Ellie Lobel had been bitten).

Another kind of very good product is CBD oil.
CBD oil with special blueprints

Both treatments deal with more than infection, more widespectrum treatment against inflammation...

Personally, I tried CBD oil before I tried BVT, and, although CBD oil helped a little with pain and mood, it did nothing for the infection.

Whereas upon commencing BVT, I got immediate short-term improvement (the days I stung) in my motor/coordination issues. And, improvements have continued until the present. Now, I rarely have a PD-like or MS-like day.

After six months of doing BVT I also gained over 20lbs. (probably closer to 30lbs.) of weight back. You should have seen the surprised expression on my doc's face when he saw me at that next appointment.

I emphasize the fact that I have continued traditional treatment of ABX & herbs/supplements along with the BVT. I'm certain BVT would have failed by itself (for my case). And, the reason I think it would have for me, is because of a couple things:

First, BVT is a potent dissolver of biofilm. All the bugs in the biofilm can possibly get released at a faster rate than the BVT can kill them. Secondly, BVT has only about 50% kill rate for gram-negative bacteria (ie. Bartonella, Rickettsias, etc.), so, in some cases, extra gram-negative antimicrobial coverage is needed.

[ 09-25-2017, 10:28 PM: Message edited by: TNT ]

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bcb1200
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So sorry to hear this. When I hear of patients who don't respond I always think of MOLD.

Don't underestimate mold. Get a realtime labs Irvine t st and do an ERMI test of your house with a swifter.

I had a huge relapse in 2015 after being exposed to crazy amounts of mold at my work. I'm now better but it took almost a year of treatment to get back.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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HW88
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I'm so sorry. This is a battle that is so hard to fight.

I love all the suggestions above and love that there are things helping people get better.

You may also want to jump over to the mhbot thread and take a look to see if you are interested. It is helping me. Phoiph is amazing and will help you get started.

Just a thought.

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Phoiph
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Thanks, HW88...I was just about to suggest reading the mHBOT thread.

Beaches, I'd be happy to help. Just PM me if you are interested and we can talk more about it.

Here's an article that may pique your interest:

http://hyperbaricstudies.com/research-studies/portable-home-hyperbaric-chambers-treat-chronic-lyme/

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garnet10
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quote:
Originally posted by beaches:
Hi everyone,

Contrary to what some believe, people don't stop posting here because things are going well. In my case, I stopped posting because things aren't. I am beyond weary and frustrated.

DD was bit in '04 and went undiagnosed til '08. Doc J didn't get her better, nor did H or B who refused to rx iv abx despite + tests. We consulted with C and she has been under the care of G, B psych and K neuro past few years. So we've seen the so-called best and are currently with the best of the best.

She's had a couple of good years-relatively speaking. And she's had a good week or two or three and good days here and there. But mostly, these years have been horrendous for her to say the least. She has missed all her teen years and her 20's are passing her by. My heart is broken and I die a little bit more every day.

She has been on multiple oral and iv abx combos over the years. IV rocephin and zith for a year gave her her life back but as soon as she came off the abx, she deteriorated. Since then she has tried that combo again to no avail and tried the woo hoo new combo that supposedly gets rid of the beast once and for all. That was a huge fail.

She's been on herbals, done detox, taken anti parasitics, gone gluten free, dairy free, went on low histamine diet, done acupuncture, done ivig which she couldn't tolerate (CIDP) and had to switch to sub-q-which she can't tolerate either, iv vitamins and glutathione, oral vitamins and probably other things I am forgetting.

She is in bad shape-bedbound-looks and feels god-awful. I wish there was a place that could provide her with iv nutrition, good meals, PT, OT, other therapy as needed, socialization, medical care. I do the best I can-provide healthy food, a good, clean home, supportive environment and I research constantly. But I am weary if it all after so many years. I have my own serious health issues that have constantly taken a back seat to my kids' needs (yes I have another one with health problems but thankfully doing OK now thank God)

I am at the point that I am ready to take her anywhere. We looked into the Germany clinic that heats you up to 107 degrees to kill the lyme. Intuitively I know this is not a good idea for her. Asked the docs-did not get positive feedback on this option.

Does anyone have positive feedback from any other place? I am willing to do anything but my God we certainly can't afford to go on a wild goose chase. We're lucky we still have a roof over our heads at this point!

Thanks for listening and for any novel ideas you might have.

** edited to remove negative comments about LLMDs **

OMG, I can relate. My teenage daughter started to note severe fatigue 2 years ago and it took a year to get a diagnosis of Lyme (positive plasmid PCR via IgeneX).

Despite seeing 2 prominent, "recommended" LLMDs
(via private messaging) we are getting nowhere. She had an initial improvement with treatment for POTS, and then a plateau.

Since I have had CFS since 2002 and have tried almost EVERYTHING ever written or researched or alternative, or even hokey for fatigue, I hesitate to try things for her that failed for me.

I'm so sad for her because I am at the "end" of my life, but she is just starting and it is heart wrenching to see your child suffering.

I am struggling to continue working so that we can afford treating her.

I am so sorry you are going through this as well. If I ever find something that works for us, I will come back and post it.

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TNT
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quote:
Originally posted by TNT:
There are plenty of Pub-Med and various other articles about the antimicrobial benefits of bee venom or it's most studied constituent- Melittin.

I don't have time to list them all or find the studies for you, but I learned from the literature that bee venom (or Melittin) is stronger than Fluconazole for fungus, very potent against Borrelia (see 1997 Rocky Mountain Labs' paper on that), potent activity against biofilm, against L-forms, against gram-positives, viruses, and about 50% effectiveness against gram-negatives. I may have missed something.

I did indeed miss a very important infection that bee venom has potent killing power against, and that is apicomplexans....or protozoans such as Babesia, Malaria, and Toxoplasma. I'm sure it has strong (killing) action against other general protozoans too.
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frikfrak
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Hi,

Just wanted to say I'm am so sorry. I too have been trying to help my DS, now 27 get well for 8+ years to no avail. We too have seen the "best".

Just made appt. with yet another LLMD.

My health is now making things more difficult.

I know I'm going to have to give up eventually, no more money, marriage over...this has taken a great toll on the entire family.

I wish you all the best.

frikfrak

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frikfrak
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Hi again,

what about Hansa...was told I should take my DS there....decided if the next LLMD fails also then that will probably be the last thing I try.

Was told is was 10,000 for the 2 weeks. Of couse, does not include after care and follow-ups.

Did hear good things about this place.

Good Luck

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Lymetoo
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It's not a given. Only a few here have been helped at Hansa.

--------------------
--Lymetutu--
Opinions, not medical advice!

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TNT
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No personal offense intended frikfrak....but,

The long-term success stories of those who've gone to the Hansa Center are few and far between. I know of only one person that was successfully treated there, and that person's dad ("Heathersdad") was a member on Healingwell, but I'm not sure he posts anymore. The Hansa Center is VERY expensive considering the gains most patients experience.

I don't understand why people will go for broke over some know-it-all doctor when people are getting cured with an almost-free treatment you can do in the privacy of your own home.

Even if you have to do it in tandem with conventional treatment for a while (many people are quickly able to wean off meds), BVT is the closest thing we have to a Panacea! Don't believe me? Try it!

beaches and frikfrak please look into BVT for your daughters. You will be amazed at what you find in the medical and scientific literature about its healing properties. Take it from someone who has been doing it for 1 1/2 years now. It is so easy to do and the gains are almost miraculous! What do you have to lose in trying it?

I recommend following Amber Rose's protocol at the start at least. And, an allergic reaction is about the only risk involved, so it's very important to have an epipen on hand at all times during treatment. Just have your doctor on board as you would with any other supplemental treatment.

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TNT
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quote:
Originally posted by TNT:
BVT has only about 50% kill rate for gram-negative bacteria (ie. Bartonella, Rickettsias, etc.), so, in some cases, extra gram-negative antimicrobial coverage is needed.

Don't let this statement alarm you to think bee venom/Melittin must not have effective activity against Borrelia, because it DOES HAVE potent killing activity against Borrelia!

But, it's not because of it's gram-negative activity.... it's because it has potent bactericidal activity against L-forms! The L-form (or cell-wall-deficient form) is almost exclusively the active form Lyme takes on in our bodies.

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frikfrak
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No offense taken, just trying to offer options.
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TNT
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I am posting on this thread for the record. The results of Eva Sapi's study on the effects of bee venom on Borrelia burgdorferi and biofilm:

http://www.mdpi.com/2079-6382/6/4/31/htm

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5745474/

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