D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Hello all
This forum seems pretty under used at the moment. Maybe I can spark a conversation.
I have a niece who has Hashimoto's and it is flaring recently. She has turned to me for some ideas on how to improve her current condition. She may have Lyme, but I don't think so. We will be doing some home made testing as her Lyme test came back negative. She lacks one of the most common symptoms which is joint pain.
I am combining my experience with Lyme disease and Crohn's disease treatment which does help to a degree, but could use some real life experience from people who have Hashimoto's. Anyone who has had some success controlling the condition and it's possible causes.
she has some pretty debilitating symptoms: Loses strength in her arms and legs to the point where she sometimes needs a wheel chair.
Tingling in extremities.
Brain fog.
Fatigue.
There appears to be a huge amount of inflammation as Cortisone relieves the symptoms for a short time. this flare may have been brought on by a viral infection.
A spinal tap did not show any indication of Guillian barre syndrome, although the symptoms are very similar.
I have sent her Cordyceps for the viral infection. NAC for inflammation and to promote the production in Glutathione. Glutathione in case the NAC is not enough. L-Glutamine to build up the mucosa in the intestinal tract. Turmeric for a hundred reasons. Rhodiola to help with stress and immunity.
My experience with my autoimmune disease tells me that Mycobacterium avium subspecies paratuberculosis (MAP) could be involved. The research shows it is a suspect in this as well as several other autoimmune conditions.
I will be treating her for MAP as I know it is quite easily killed using a Rife Machine. I removed it from myself a few years ago. I am hoping that a best case scenario would be a reversal in the disease. My instincts tell me it is unlikely to be quite that easy. However, I am not aware of anyone who has removed MAP from a Hashimoto's patient as it is virtually impossible using conventional medicine. So it is unknown what the result may be at this time.
If anyone wants to chime in with ideas or personal knowledge of the disease, I certainly would appreciate it.
Best regards.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Dan,
If you haven't already, I would suggest researching mild hyperbaric for autoimmune conditions.
There is also some limited research out there on hyperbaric and MAP.
There are so many ways it could be helpful; reducing inflammation, reversing autoimmune reactions, releasing stem cells, and turning on healing genes to name a few.
My experience is that once neuro-immune function is normalized via mHBOT, the immune system can take care of the infections.
I have known people who have had to reduce (or go off of) their thyroid meds once they have done a number of sessions. I personally went off all meds, including thyroid, as I became well with mHBOT. It does take time and commitment.
If you are not yet familiar with mild hyperbaric, a good overview book is "The Oxygen Revolution", by Dr. Paul Harch.
You can also read more on the LymeNet Mild Hyperbaric thread, or feel free to PM me, and we can discuss it in more depth.
Posts: 1977 | From Earth | Registered: Jul 2013
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Thank you for the information. I was not aware of mHBOT as a treatment for this. I know HBOT has been used for Lyme disease and it makes me curious what its potential would be for other autoimmune diseases.
It may not be an option as I am pretty sure insurance wouldn’t pay for it and private pay would be quite expensive. She lives in a small rural area and likely doesn’t have it available locally.
I will read up on that thread as Hashimoto’s is not my area of expertise, although I am pretty familiar with the possible mechanisms of autoimmune disease in general.
Best regards
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Please do read the thread in its entirety, if possible; as there's a lot of information there.
Note: Home chambers are available at significantly less cost compared to what was posted on the thread 10 years ago, and there are rent-to-own options available also. If you decide you're interested in going that direction, I can explain the current options to you in more detail.
Posts: 1977 | From Earth | Registered: Jul 2013
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dan, I have Hashi's and it can be tamed with the proper thyroid treatment. Levothyroxine is NOT the miracle treatment. My antibodies were 500+ and 1400+ prior to getting myself educated on the truth about thyroid disease & Hashi's.
The thyroid illness world is as crazy as the Lyme world when trying to get proper treatment. This site is where I found my truth.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6489 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I second the recommendation and consideration of mild hyperbaric oxygen therapy. I have Hashimoto's. Diving helps tremendously.
Personally, I would not dismiss the Lyme diagnosis as it can cause all of what you describe. But the good news is that diving would help.
Phoiph was a huge source of information and encouragement as I first started diving. I would encourage you to tap into that resource.
Posts: 1761 | From Maine | Registered: Jun 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Thank you all for the valuable information.
In addition to various supplements to address inflammation and various other possible problems, I did treat her for the MAP bacterium. Her walking has improved? Her brain fog left for a short time, now is back. That might be due to the detoxifying nature of some of the supplements. If it is, that should go in a few weeks.
Her fatigue is unchanged so far. Going to assess in another week and proceed from there.
Best regards.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Hello.
Just a quick update on my niece:
Her symptoms continue to improve although it hasn’t been very long into this. She worked all day, went grocery shopping and felt good. Her legs were a little tired afterwards but considering she was sometimes using a wheelchair at work, quite a change. Her walking is near normal.
The Lyme test I sent her, which consisted of a bottle of Samento has not produced any kind of herx, so coupled with the negative standard Lyme test and her lack of joint pain, I would think it is highly unlikely Lyme is in the picture.
I will update in another week or so.
Thank you all for the support. Not just now, but to the hundreds of people, some not alive any longer, that helped me when my wife was very ill with Lyme disease and co-infections. I will forever be indebted to you all.
Sincerely
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Dan, I know you've helped many people as well over the years.
Glad to hear your niece is doing better!
Looking over her symptoms again (e.g., "recent flare" of muscle weakness, fatigue, brain fog, tingling, etc.) I am wondering if she could possibly have Long Covid?
Posts: 1977 | From Earth | Registered: Jul 2013
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Yes, she may have had long COVID that triggered the Hashimotos to flare up. I thought of that and was one reason I sent her the NAC.
On the other hand it also could be Epstein Barr virus, which she tested positive for. The Cordyceps and the addition of Samento should at least reduce that.
The MAP treatment was to hopefully get rid of the Hashimotos altogether. It may not be that simple but my hypothesis is that the immune system is attempting to kill the MAP, which has accumulated in the thyroid gland. It is not able to eliminate it so constant inflammation damages the thyroid. Much the same as my Crohn’s did in my intestinal tract.
Remove the pathogen, you remove the inflammation and if the thyroid gland can recover enough, the disease should be resolved.
Since mainstream medicine cannot eliminate MAP I have no reference as to whether this works that way or not.
Possibly that is why HBOT works, because it can help get rid of MAP.
If this does work, I know someone with type 1 diabetes. This is suspected to be caused by MAP also. It would be a simple treatment and results could be verified by less insulin use.
In both cases, I do not know the regenerative capabilities of the thyroid gland or the pancreas. I should look that up.
I will report back when I have more information.
Best regards.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
sorry about your niece , Dan, but you are a special Uncle to care and actually help her.!
I started devloping Hoshimotos after decades of fighting Lyme and other TBD. I am now in my 60s and the thyroid was always alittle wonky, but not lab going off strangely until a couple years ago. (I also developed breast cancer and I DID find a link of thyroid /breast cancer, but nothing drs. know of why this happens yet)
DEF> NOT saying your niece could have BC, but the faact that chronic inflammation can cause cancer and make any or all organs, etc, to go wonky , cause unlimited symptoms, etc, I would say figuring out what is causing the inflammation is important.
Recently I had updated ART testing which has so far been a total game changer. If you happen to live in NE/E Pennsylvania I can recommend the place that is helping me- you can PM me.
keeping in mind the ART and the person I work with have been helping me with so many issues not tick disease caused, per se, but happened because of my body's constant state of inflammation.
hope this makes sense
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3588 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic