posted
For over 2 years now, I've had positive rheumatoid factor (RF) and positive ANA test with nucleolar pattern and more recently, a dual pattern that also includes homogenous pattern. This is all new, many years into the tick borne illnesses.
I know Lyme et al can imitate any number of autoimmune diseases. My pain and many other things like Raynaud's symptoms, etc., have all gotten much much worse over time. Treatment doesn't seem to be reversing any of this.
The ANA pattern I have tends to indicate scleroderma or mixed connective tissue disease (similar and overlapping). The internal version of scleroderma would fit with a lot of my symptoms (and also MCTD).
I'm worried this won't all turn around. Have others had a major turn-around in RF and ANA and the accompanying symptoms of autoimmune diseases that came after getting Lyme? What else helped? How long for any change?
Posts: 30 | From Massachusetts | Registered: Jan 2017
| IP: Logged |
posted
I am sorry that I cannot give you near the specifics that you have listed as I have been told I have a gene that predisposes me to AI issues and because my mom died rather suddenly from amyloidosis(a blood cancer) that has an AI component-
knowing I've had Raynaud's for years and then developed hypothyroidism- I've researched the AI piece due to chronic lyme being thought to have AI components.
I can tell you nothing really got better for me until I got with the best lyme doc I could find, began the GAPS diet to heal my gut, became dedicated to daily detox- IF saunas daily when on heavy abx, coffee enemas and now the AIP diet.
Dr. Tom O'Bryan has a book called Autoimmune Fix. I'd say it's a must read. You have to be clear on how the weak link breaks in order to stop this cascade.
Phoenix Helix has a great podcast with him on it. Very informative. I hope this helps you as our bodies are designed to heal. With AI diet appears to be crucial. Godspeed!
posted
Thanks, Lymetoo.... that is good information. I really appreciate it. This AI piece is no fun. Now to go read up on Oxalates! Thanks again!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
iv curcumin has helped my vasculitis . bvt has helped my livedo and arthritis
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I would guess that diseases catagorized as "autoimmune" are for the most part, no such thing. As a person with an autoimmune disease without lyme, I believe the mechanisms that lead to most autoimmune diseases are similar.
Something leads to an ineffective immune response. That something can be Lyme, another pathogen, possibly environmental such as mercury or a host of other contaminants or chemicals.
In my case Crohn's disease raised its ugly head in my mid forties. I am sure the predisease state was present since I was a teen. It just took a slight weakening of my immune system to really take hold.
In your case, Lyme is most likely the catalyst that got the autoimmune train rolling. We a have low levels of various pathogens and all it takes is an opportunity for them to thrive and a new disease can be the result. Even if you eliminated the original cause, the Borellia, the new disease is established and will most likely need to be dealt with as a separate entity.
What if any pathogens are indicated for your new disease state? What does the research indicate? By research I mean official and anecdotal. I have found truth in both quarters.
How can I address these indicated causes? I use Rife frequency treatments for most pathogens but only because it is selective and usually, but not always, work well enough. I use other methods also if that is the most practical route. I don't care how I address it as long as it's relatively safe and effective.
Then you test. I have gradually narrowed down the causes of symptoms and am homing in on the original cause or causes.
Here are some of the suspicious pathogens that can both weaken the immune system and cause symptoms other than borrelia that I have found in myself.
Mycoplasma pneumonia and possibly mycoplasma fermentans.
Klebsiella pneumonia.
One indicated in various autoimmune diseases is various strains of mycobacterium. Mine is specifically mycobacterium tuberculosis subspecies avium. Research indicted this also.
These are mine and are likely involved in various autoimmune diseases but there are others that I may not have that others do. None of the above are rare. It's only at a certain threshold that they will cause disease.
That's my best answer at this time. I learn more as time goes on so none of this is a last word or static. You will learn other things along the way. To me, that's one of the things that makes forums like this valuable. Shared insight and experience.
Good luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
posted
Dan, I was given a Rife machine by another patient, but haven't started using it -- however, I'd be interested to know what frequencies have helped, definitely, if you keep posting. I actually tested neg. for mycoplasmas but know the tests can be useless. I'm positive for a lot of other things. . .
And Will, thank you, I will look up the book too. I know what Amyloidosis is, truly terrible disease, and I think in my family there is a genetic component as well, though less clearly defined. I do regular coffee enemas, can't do FIR sauna now b/c of PICC, but agree the detox is helpful though right now not doing enough for me. . .
Bluelyme, how did you get IV curcumin? I have been really curious about IV herbs in particular, but actually haven't heard of anyone offering that. Would love to know, that sounds good.
Posts: 30 | From Massachusetts | Registered: Jan 2017
| IP: Logged |
posted
Also, Will, I'm curious what the specific gene is you mentioned -- did you show particular autoantibotides or something that indicate autoimmunity or was it via more direct genetic testing somewhere? Curious, as I'm pursuing both angles.
Posts: 30 | From Massachusetts | Registered: Jan 2017
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Cytokines and chemokins cause those awful inflammatory responses linked to auto-immune.
It's not only pathogens causing our immune system to go high in cytokines, but many other things, as said above (specially toxins, heavy metals, anything allergenic).
My take in it is that once you start the cascading of inflammation, be it just because you eat, e.g. gluten or anything your body does not like (allergen or intolerance), then you start small inflammation.
Then the immune system goes bananas, slowly but surely.
I don't think researchers really know what happens well.
As always, they can describe molecules involved in the process, but what triggers the 'going banana' reaction is unknown (except for pathogens...).
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Very simple article about cytokine storms, and some suggestions what could help to stop it....
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
For me, stopping to eat foods that tested bad helped me with energy, overall well being.
Chelation is a must, unfortunately. Places with high concentration of heavy metals are usually where inflammation (and infection) lodge.
Herxheimer triggers inflammation: so binders, are a must. Without binders, welcome to more inflammation, and increase of cytokines.
Once the cytokine cascading effect starts, that is where hell starts, in my opinion...
Low grade inflammation is the welcome card for all autoimmune diseases. When you reach that, getting rid of lyme, candida, all infections get at least 20 times harder than when do not tend to react with inflammation...
my opinion only.
Diet is crucial, binders are crucial, then everything else you take as antioxidative, may help.
FIR saunas, ALL detox and oxygenation techniques will help for sure, as we tend to react with inflammation when toxins accumulate.
Doing Rife instead of drugs is good idea. Whatever you do that avoid putting more toxins will help (like being drug free, as much as you can).
Anything supporting the liver, lymph, gut and kidneys, massages, acupunture, herbs, homeopathy, frequencies, high voltage, all are helpful.
My lyme is long gone, but I still fight candida on and off. Pretty many similar inflammatory responses, like lyme, but weaker...
I guess, the gut is one of the central factors: inflammation starts there. Then other allergens will just pile up, one by one, until your whole body gets into that awful cascading...
In the last months, I could finally feel better, after decades fighting candida inflammation. But it takes time and work...
I think my kimchi helped (probiotics, allicin, etc), then high voltage devices (for circulation in the organs, so helping cleaning toxins off)...
I finally could invert the curve of food allergies, that started to become scary. I finally can eat most nuts that I couldn't touch for so many years. Even oranges, pineapple, stuff like that.
I mean, to be able to eat ALL NUTS is something that feels almost like a miracle to me. Before, my mouth would simply burn.
so I think I'm going to the right direction, finally. Still didn't win the war though, only battles.
In my opinion, it's not drugs that solve that, only a more holistic and natural way of life can bring you back in track.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Bheart- I'll ask my doc at the next phone consult. It will be awhile though- 9 months likely.
I do know my hormone doc tested for AI antibodies with my thyroid 6 months ago and they were not there. I found this encouraging as I've really been working the AIP diet as I know it helps just in the way I feel.
I'm trying to give mhbot it's due right now so I'm not pursuing anything beyond it, rife and herbs right now to see where I am at.
At some level I'm afraid to do the in depth testing. I'm just not there yet I'm afraid.
I know Dr H tests for autoimmune markers like RA etc yearly and so far so good there. However- the initial test definitely showed a tendancy toward AI when I started with him.
Sorry I cannot be more help right now. Quite frankly DBergy and Brussels are two of the MOST knowledgeable and caring folks I have had the fortune to learn from. Thank you both for all and coming forward here. Godspeed BartHeart! You can beat this stuff too!
(breaking up the post for easier reading for many here)
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Bartheart
Let me know what you would like to treat and I will find the frequencies. For Lyme 2016, 432, 840.6 Hz. Best ones I have used except for 432. That one helps a lot of other people but didn't help my wife. I think that is because she does not have Bb but another strain. Need to work more on figuring out the strain.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
posted
I've had Lyme twice. Got Hashimotos both times, but once I was able to rid myself of the Lyme, Hashimotos went away. My Lyme doc said I was the 1st she ever saw reverse it so dramatically.
My understanding was Lyme causes inflammation, inflammation causes autos.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
| IP: Logged |
posted
Brussels I did test high for lead not long ago (of all things!!??? Cannot find it anywhere in house or water so likely exposure from some time ago), so am actually doing EDTA chelation now (better for lead, apparently). Hoping that will clear up some things for healing.
I haven't found a binder that was really that helpful, but did do a mold remediation of my house after ERMI was high, and still need to really do the cholestyramine protocol full force (I find it super constipating though which is kind of an issue, so other suggestions helpful). I'm sure it has contributed to the inflammation as I tested pos. for a lot of the mold blood markers.
Will I did get some good ideas for even more auto-antibody testing from Dr. H's new book, if that's the same Dr. H you're talking about (his newest book came out just a couple months ago).
I just started fermenting my first homemade batch of kimchi, so we'll see how that goes! I actually have found red wine to be anti-inflammatory for me, which I know most docs don't agree with, but as someone who didn't have any alcohol for years and years, it now is one of the only things that helps acute inflammatory symptoms -- just taking resveratrol/knotweed doesn't cut it for me.
Brussels thanks for all of those additional resources too.
Wow, Jsnyde, on the reverse of Hashimotos, very interesting. Did you have babs too? I ask b/c of your noted location where it's so endemic, but also b/c I think babs is a real heavy player in this for me.
Posts: 30 | From Massachusetts | Registered: Jan 2017
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic