HealingWell
Search Close Search
☰

Lyme disease is baffling, even to experts

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/28/2019 10:17 AM (GMT 0)
Lyme disease article in The Atlantic:

https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/

There is information about Dr. H in this article. Also a link to a working group he was part of:
https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf

Post Edited (gfields) : 8/28/2019 4:21:01 AM (GMT-6)

Posted 8/29/2019 1:19 AM (GMT 0)
I think this was the link I posted a while ago
Posted 8/29/2019 4:08 PM (GMT 0)
yes it is really hell to have this illness this is why I am not better yet after 6 years and am actually the sickest I have been because i have not found anyone who knows how to help me yet sad it is horrible
Posted 8/29/2019 5:11 PM (GMT 0)

flowergarden said...
yes it is really hell to have this illness this is why I am not better yet after 6 years and am actually the sickest I have been because i have not found anyone who knows how to help me yet sad it is horrible

Have you been to an experienced LLMD? One that really knows his/her stuff?
Posted 8/29/2019 6:36 PM (GMT 0)
I mean I dont know~! My ost recent one was an ilads trained llmd. before that a llND who is supposedly specializing in lyme. before that another llnd specializing in lyme. originally an llmd who dr horowitz's office recommended to me as they werent taking new patients. I also went to the hansa center 5 times ( during which I got a little better for about 2 years). Have a new doctor I am going to try next but so far no one has helped me other than hansa a little for a short time. oh and also just did 6 months of biomagnetic pair therapy which did not help. And, when I first got the tick bite 6 yrs ago got on antibiotics and herbs right away-- for about a month, then a short break then the llmd who put me on antibiotics for 9 months., got sicker- then hansa center for a 2 yr period where it got a bit better but cost way too much $$$- and it kept comign back. Then nothing for a couple years- was in about 75% ok but still couldnt breathe, then started getting sicker last year- breathing terrible- then did the biomagnetic pair therapy- breathing improved a tiny bit but heart and inflamed diaphrgam gut everythign got worse- and then tried an llnd who I HATED she was horrible,, then an llMD who just said go on crypto for babesia and see what is left-- so here I am sick sick and inflammed and heart issues and all kinds of weakness- dont feel the crypto alone is sufficient or correct so trying a new dr dont want to get too into it just that some people I know said they were helped by the new dr so worth a try. have an appointment next week.

Post Edited (flowergarden) : 8/29/2019 12:41:12 PM (GMT-6)

Posted 8/29/2019 6:54 PM (GMT 0)
Oh - wow flowergarden!

So sorry you’ve been at this for so long with only minimum/short term improvement.

I hope this new Dr will be able to help you.
Posted 8/29/2019 7:10 PM (GMT 0)
I've learned, as I guess most of us have, it is a somewhat educated guessing game with treatment. Hoping you get some better options, flowergarden.

With reading so much and trying to find some hope out there, I believe the best hope for health issues of all types is in stem cell research. Maybe I'm wrong on that, but I've seen it do wonders for people on less complicated issues. My daughter had plantar fasciitis and had not been able to run for weeks. A podiatrist I took her to said he could give her a stem cell shot, and she would be running in a week. I asked if we did it would we come back and him tell us it might take another shot. He said this shot will work.

She was running some in a week and full speed within 20 days. Praying that type of result will come for Lyme and other health issues. From all I've read, I believe it will but will take a while, even though some people have said they have improved already from stem cell transplants.
Posted 8/29/2019 7:24 PM (GMT 0)
runningwild - was it the PRP (platelet rich plasma) that your daughter had?

They take it from another place in your body right? Or is that something else I’m thinking of?

I’ve read about the PRP for knees... I wonder why it’s not advertised/offered much ?
Seems like the way to go
Posted 8/29/2019 7:28 PM (GMT 0)
thanks, Girlie. I know-= I have been at it for a long time and feel like I should have done some comprehensive treatments that actually worked by this point but even with all my research and many doctors I am still confused by it and still very sick. thanks for the enocuragement.
Posted 8/29/2019 7:32 PM (GMT 0)
They were from umbilical cord. Might have been mesenchymal. It was my first experience with stem cells. My thought is if they can do that, more research will have to doing great things for cancer, kidneys, Lyme, etc... It's a matter of research money and the hope it won't be thwarted by politics and company money.
Posted 8/31/2019 3:43 AM (GMT 0)
you're right. I think there's a lot of potential for stem cells. Unfortunatly, the FDA realized the potential and have decided to outlaw it as much as they can. They just outlawed adipose stem cells. I don't think they'll be able to outlaw bone marrow stem cells as it has been used for a long time with cancer patients.
Posted 9/1/2019 10:40 PM (GMT 0)

gfields said...
you're right. I think there's a lot of potential for stem cells. Unfortunatly, the FDA realized the potential and have decided to outlaw it as much as they can. They just outlawed adipose stem cells. I don't think they'll be able to outlaw bone marrow stem cells as it has been used for a long time with cancer patients.

My LLMD currently uses umbilical cord stem cells for treatment in his office. He hasn’t been touched by the FDA. Are you referring to only a fat based stem cell ban? It wouldn’t surprise me if umbilical stem cells would eventually be banned though. It’s natural and therefore not part of Big Pharma, and we can’t have that now, can we?
Posted 9/2/2019 3:34 AM (GMT 0)

Fade2Blonde said...

gfields said...
you're right. I think there's a lot of potential for stem cells. Unfortunatly, the FDA realized the potential and have decided to outlaw it as much as they can. They just outlawed adipose stem cells. I don't think they'll be able to outlaw bone marrow stem cells as it has been used for a long time with cancer patients.

My LLMD currently uses umbilical cord stem cells for treatment in his office. He hasn’t been touched by the FDA. Are you referring to only a fat based stem cell ban? It wouldn’t surprise me if umbilical stem cells would eventually be banned though. It’s natural and therefore not part of Big Pharma, and we can’t have that now, can we?

That's interesting. I didn't realize you could get umbilical cord stem cell treatment in the US. I thought it was frowned upon because the cells are not your own and can be rejected by the body. I'm no expert on the subject, but I'm interested in reading up on it more. Do you know anyone who has had it done? Did they have good results?

But, yes, I was referring to adipose stem cell treatment. I spoke to US Stem Cell and they said that the FDA banned them from using this treatment a month or two ago. They said that they can continue to use bone marrow stem cells.
Posted 9/2/2019 3:54 AM (GMT 0)
Here's an intersting video on stem cells:
https://www.youtube.com/watch?v=vxoC90148pE

https://www.youtube.com/watch?v=f9O3Lyz8qw0

Post Edited (gfields) : 9/1/2019 10:19:03 PM (GMT-6)

Posted 9/2/2019 1:22 PM (GMT 0)

gfields said...


That's interesting. I didn't realize you could get umbilical cord stem cell treatment in the US. I thought it was frowned upon because the cells are not your own and can be rejected by the body. I'm no expert on the subject, but I'm interested in reading up on it more. Do you know anyone who has had it done? Did they have good results?

But, yes, I was referring to adipose stem cell treatment. I spoke to US Stem Cell and they said that the FDA banned them from using this treatment a month or two ago. They said that they can continue to use bone marrow stem cells.

That was my concern about umbilical stem cell usage at his practice. The chance of HLA incompatibility, and I argued with my doctor about it. I think there’s still a chance of rejection, but the company he uses claim there’s not. See https://burstbiologics.com/discoverrejuv/
and https://www.cellmedicine.com/stem-cell-therapy-for-osteoarthritis/

Other sites, mainly US government sites, https://www.fda.gov/consumers/consumers-updates/fda-warns-about-stem-cell-therapies

report differently.

This site brings an interesting perspective on how to keep the umbilical cells viable for transfer: https://www.beaconortho.com/amniotic-stem-cell-injections-fact-fiction/

I’m still deciciding, because bioburst is the company my LLMD uses, and to me, they simply don’t have enough research. In fact, they barely have 1 study, the last time I looked into it. I don’t know any patient who has done it. I do know they had a price reduction for them, so that makes me even more cautious. Stem cells on sale? Reminds me of clearance sales on poorly designed clothes.

Yes, I saw in that FDA link I provided that they banned adipose stem cells. So I guess Infusion out of Beverly Hills is out of business then? They sounded like snake oil salesmen anyway. I guess the best thing is to be cautious what you allow to be put in your body.
Posted 9/2/2019 1:45 PM (GMT 0)

gfields said...
Here's an intersting video on stem cells:
https://www.youtube.com/watch?v=vxoC90148pE

https://www.youtube.com/watch?v=f9O3Lyz8qw0

I haven’t gotten through the entire second conference yet, but this company/site is more promising than what my LLMD uses. I would feel more comfortable doing a stem cell treatment here. The question is cost.
Posted 9/2/2019 4:33 PM (GMT 0)
Ya, the Joe Rogan podcast with Mel Gibson is really interesting. The doctor says he uses umbilical cord cells that are mesenchymal and apparently do not get rejected:


Will the patient reject this type of stem cell?

The body’s immune system is unable to recognize umbilical cord-derived mesenchymal stem cells as foreign and therefore they are not rejected. HUCT stem cells have been administered thousands of times at the Stem Cell Institute and there has never been a single instance rejection (graft vs. host disease). As a matter of fact, allogeneic (not the patient’s own) mesenchymal stem cells are approved to treat graft vs. host disease in Canada and New Zealand.

Umbilical cord-derived mesenchymal stem cells also proliferate/differentiate more efficiently than “older” cells, such as those found in the fat and therefore, they are considered to be more “potent”.


............

This company sounds the most promising. However, it also sounds like the reject a fair number of patients and the cost is about 25k.

Here is a link to a book that the Dr. wrote:
https://www.amazon.com/Stem-Cell-Therapy-Disrupting-Transforming/dp/099904530X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=
Posted 9/2/2019 5:26 PM (GMT 0)
I can only attest to what it did for my daughter's foot. It was unbelievable. I've read much information since then about stem cell therapy. Many are working to harness it to treat exact problems, such as damaged nephrons in kidneys, for example.

Hopefully, in the next few years, we will see more great things happening with stem cell treatment if the government will not over-step. I believe in being safe with oversight, but letting politics/money get in the way is a shame. Just look at how Lyme Disease has (not) been handled.
Posted 9/2/2019 6:51 PM (GMT 0)

gfields said...
Ya, the Joe Rogan podcast with Mel Gibson is really interesting. The doctor says he uses umbilical cord cells that are mesenchymal and apparently do not get rejected:


Will the patient reject this type of stem cell?

The body’s immune system is unable to recognize umbilical cord-derived mesenchymal stem cells as foreign and therefore they are not rejected. HUCT stem cells have been administered thousands of times at the Stem Cell Institute and there has never been a single instance rejection (graft vs. host disease). As a matter of fact, allogeneic (not the patient’s own) mesenchymal stem cells are approved to treat graft vs. host disease in Canada and New Zealand.

Umbilical cord-derived mesenchymal stem cells also proliferate/differentiate more efficiently than “older” cells, such as those found in the fat and therefore, they are considered to be more “potent”.


............

This company sounds the most promising. However, it also sounds like the reject a fair number of patients and the cost is about 25k.

Here is a link to a book that the Dr. wrote:
https://www.amazon.com/Stem-Cell-Therapy-Disrupting-Transforming/dp/099904530X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

I feel it’s worth at least calling in for information, but who are they rejecting? People who aren’t celebrities? Meaning most of us? They did have a list of conditions they did not treat. MS but not Parkinson’s or Alzheimer’s? That makes no sense if you believe like me that they’re all one in the same disease, Lyme disease. There’s research out there that goes back as far as 1911 describing B. burgdorferi found in the brains of “MS” patients. Then Alan MacDonald’s research on “Alzheimer’s” patients also having B. burgdorferi. That made me think they’re not aware of what the scope of treatment could be. It’s a lot of money too to spend on an experimental treatment.
Posted 9/2/2019 6:55 PM (GMT 0)

running wild said...
I can only attest to what it did for my daughter's foot. It was unbelievable. I've read much information since then about stem cell therapy. Many are working to harness it to treat exact problems, such as damaged nephrons in kidneys, for example.

Hopefully, in the next few years, we will see more great things happening with stem cell treatment if the government will not over-step. I believe in being safe with oversight, but letting politics/money get in the way is a shame. Just look at how Lyme Disease has (not) been handled.

I’m glad the treatment worked for your daughter! Great news there! smile Unfortunately, I do believe the government will continue to be a blocker of the treatment we need. Lyme disease patients don’t use expensive Big Pharma meds, so we’re kicked out in the cold. Not to mention they wish we would just go away
Posted 9/2/2019 8:39 PM (GMT 0)

JovaLyme said...
Hi everyone,

I'm a newbie and this thread seemed like the perfect place to make my first post.

Lyme is definitely baffling. I've been in a battle with the NHS (I live in the UK) for years trying to find out what is wrong with me and I've now given up on conventional medicine. I have every single symptom of Lyme, Bartonella, Babesia etc and am really struggling now. I have a tick scar on my right leg and around 15 years ago I was bitten by something while in Australia and was very ill with fever and a very swollen leg and foot. I was given a very short course of antibiotics and went home. Within months I started getting strange headaches, fatigue and all kinds of strange psychological symptoms. I've been diagnosed with everything from bipolar disorder - to fibromyalgia and am getting worse and worse. They suspected possible multiple sclerosis, but an MRI of my head ruled that out.

After stamping my feet and arguing with doctors about whether chronic Lyme even exists (sound familiar?), I eventually tested negative on the NHS IGG/IGM. No surprise there. I am now awaiting the results of an Elispot from Armin Lans in Germany, which a charity has paid for. My doctor actually refused to draw the blood for this test for no other reason than because it's not British!

Lyme is not only baffling, but frustrating. I've been reading posts on here for quite some time and have tried some of the herbal protocols without success so far. I currently have a drawer full of supplements that I have no idea what to do with anymore. It's not just the Lyme that makes this such a nightmare. You can throw in leaky gut, candida and all the other things so often associated with attempts to cure yourself. There is so much to deal with that your already spinning head spins even more with almost every attempt you make to help yourself.

Trying to find success stories is hard as well. Most online searches just throw up countless sites owned by people trying to sell you some kind of miracle cure because they know people with Lyme are desperate enough to buy it. I'm beginning to wonder if anyone in this world really knows how to tackle Lyme. It seems to affect people in so many different ways and is a totally unique illness that is specific to each individual who suffers from it. Right now I have pain throughout my body, can barely see or breathe, I'm totally depersonalized, have horrible sensations in my head, crawling skin, pins and needles etc etc.

It's baffled the medical profession and it's destroying the lives of those who have it. I just thank God for forums like this. If a cure is found for this horrible illness, I strongly believe it's going to be found by the people afflicted with it through trial and error, sharing experiences and making themselves heard.

Welcome, JovaLyme!

Sorry for the lack of care you’ve received thus far.
It’s a too familiar story that the majority of us have experienced unfortunately.
And you have a set of extreme symptoms to try to manage on your own.
I hope you stick around - we have a lot of caring and resourceful members here - you’ve prob found that to be true already.

You mentioned testing. What are your plans when you get the results?

Are you looking for a lyme doc to treat you?
Posted 9/2/2019 8:48 PM (GMT 0)
Before I shell out 25k and mail myself down to Panama for this miracle, fountain-of-youth treatment, I have to allow my inner skeptic to express his first amendment rights...

There's no chance that the Stem Cell Institute may have financially compensated Mr. Gibson to promote their stem cell therapy, is there? Afterall, I did not see Senior Gibson on the Joe Rogan podcast speaking to his own personal experience.

I seem to remember Mr. Gibson having some incidents in the past with alcohol:
https://www.youtube.com/watch?v=yrj7o480vZg

On wikipedia, it says Mel started drinking when he was 13 and has been an alcoholic for a long time:
https://en.wikipedia.org/wiki/Mel_Gibson#Alcohol_abuse_and_legal_issues

As of 2014, he was paying his ex-wife 20k a MONTH in child support, which I would imagine would add up quickly, even if you're a multi-millionaire:
https://www.tmz.com/2014/03/05/oksana-grigorieva-bankruptcy-mel-gibson-child-support/

My experience with alcoholics is that they may be desperate and have loose morals. If someone came to him and offered him X to do Y, would he not take them up on the offer?

I can do a bit more research on the Stem Cell Institute and see if there are "every day" patients who are willing to discuss their experiences with the treatment. I would like to also see if there are "every day" Lyme patients who have had the procedure performed, and read about their experiences as well.

I need to keep myself in check, as I am probably somewhat desperate to regain my health, and watching a youtube video that makes regaining health look so easy is a very attractive proposition, but I've found that there are not too many things in life that are that easy. With that being said, stem cells do seem to hold a lot of promise. Perhaps I should purchase the Drs book and give it a read through. Or give it to a medically-educated person and have them give it a read through and see if it can stand up to scrutiny.
Posted 9/3/2019 1:14 AM (GMT 0)
Jova- yeah I got the bipolar diagnosis too and am still on meds. They put me thru the wringer trying to get rid of my "symptoms" which I still believe are all Lyme wreaking havoc in my brain. If I could get rid of it I'm sure I wouldn't pass as bipolar anymore but in the meantime I need some stuff to calm down my overactive brain. Psych diagnoses are basically the norm when you have Lyme, after all the bacteria go everywhere and that includes your brain.
Posted 9/3/2019 6:16 AM (GMT 0)

jb1994 said...
Jova- yeah I got the bipolar diagnosis too and am still on meds. They put me thru the wringer trying to get rid of my "symptoms" which I still believe are all Lyme wreaking havoc in my brain. If I could get rid of it I'm sure I wouldn't pass as bipolar anymore but in the meantime I need some stuff to calm down my overactive brain. Psych diagnoses are basically the norm when you have Lyme, after all the bacteria go everywhere and that includes your brain.

A good number of my symptoms are originating from my brain/CNS

I have been told I have an irritated limbic system from lyme.
I also have POTS - which is an ANS issue.
Posted 9/3/2019 9:12 PM (GMT 0)
consider trying Hydroxytyrosol, and anti oxidant that crosses the BBB

very few know about it


https://www.amazon.com/gp/product/b06wp6cqdx/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=utf8&psc=1


Girlie said...

jb1994 said...
Jova- yeah I got the bipolar diagnosis too and am still on meds. They put me thru the wringer trying to get rid of my "symptoms" which I still believe are all Lyme wreaking havoc in my brain. If I could get rid of it I'm sure I wouldn't pass as bipolar anymore but in the meantime I need some stuff to calm down my overactive brain. Psych diagnoses are basically the norm when you have Lyme, after all the bacteria go everywhere and that includes your brain.

A good number of my symptoms are originating from my brain/CNS

I have been told I have an irritated limbic system from lyme.
I also have POTS - which is an ANS issue.

✚ New Topic ✚ Reply
12