Hi everyone. I think lyme and my coinfections has triggered an autoimmune illness of some kind.
I have been on TONS of abx in many different forms and combinations for years now and I have seen no appreciable improvement in symptoms.
Also my blood work does not show the "typical" things one sees w TBD (I have a very high ANA and WBC and a very low RBC count).
I think it is time for me to look at my case from a different angle. My LLMD agrees that perhaps I had a propensity for autoimmune illness and that the tick infections lit the match that has sparked this bonfire of symptoms I am now experiencing.
Any thoughts on this theory? it is not an invalidation of lyme and TBD as the cause..it just means it has now possibly mutated into something else that abx will have no effect on.
Thanks in advance for any responses. Jess
Posted by Razzle (Member # 30398) on :
And yet, TREATING the infections that are the cause of the autoimmunity would likely result in a decrease or complete disappearance of the autoimmunity...
I know you've been on a lot of treatments, but I do not believe you've treated with an LLMD who is skilled enough to handle your case.
Treatment has to be customized to the individual. I have not seen customization done in your case.
You have detox challenges, gut challenges, and a complex mix of infections. Most LLMD's can't handle this difficult a situation successfully.
I'm in the same boat. But I am seeing results very slowly with patient, slow, long-term dosing of Flagyl...
I personally think you need a better medical team managing your care...
All of the above is just my opinion.
Posted by Rivendell (Member # 19922) on :
That might be possible, but with autoimmune illnesses, the doctors focus on ramping down parts of your immune system, which might cause the infections to gain strength.
Just a suggestion. You might try natural approaches to balancing the immune system and reducing inflammation such as:
- taking fish oil (several per day)
- taking the herb "Japanese Knotweed" (a Buhner herb for lyme that focuses on balancing the immune system and shutting down the exact inflammatory pathways that Lyme uses to survive in your body)
- drinking lots of decaf green tea
Sometimes green tea is the only thing that helps me when my immune system and/or infections/herxing are going haywire.
I drink about eight cups of green tea per day with licorice root on my worst days. (Avoid licorice if you have high blood pressure).
There are other immune balancing herbs, but these work well for me.
Or you could try a good naturopathic physician.
Posted by Ellen101 (Member # 35432) on :
I actually agree with you. This is exactly what my LLNP said could be happening in my case.
Posted by MichaelTampa (Member # 24868) on :
Parasites (a related part of the disease; a coinfection as ILADS would put it) are apparently good at causing the autoimmunity. You have to treat them to improve that. Abx will not treat parasites, there are specific things for parasites.
Posted by D Bergy (Member # 9984) on :
LDN is used to treat autoimmune conditions and may be another option. It ramps up the immune system so is thought to help with Lyme also.
How does a person avoid all the fluoride in green tea?
Dan
Posted by Kudzuslipper (Member # 31915) on :
Jess. I agree that you need another set of eyes too. But pull that in as part of your team. As said above, they will likely push for immune suppressants and you need to measure the pros and cons-- but it is possible, if you find a good one, they will take all your history together and try to come up with another solution.
But quality of life is so important. About a year and half ago, I got a steroid shot, I knew it was bad for lyme... but you know what, for 3 months after that...I felt normal and it gave me the strength to continue. I am in a worsening place again, and debating whether to go back on ABX or look at autoimmune as well, as it runs in my family. So don't rule out immune suppressants-- just go into them smartly and armed with as much info as possible.
(I just wanted to add I was on a lot of ABX when I got the cortisone shot.)
Posted by ArtistDi (Member # 2297) on :
Check out this llmd's blog. Sometimes autoimmunity can be involved.
I agree with Michael.
Posted by nefferdun (Member # 20157) on :
Protomyxzoa rheumatica causes auto immune diseases. Look at the last part of the name - Rheumatica - because it causes rheumatoid arthritis, as well as MS, Hashimoto's, IBS, ALS, parkinson's, diabetes, etc.
The last thing you want to do is take anything that suppresses your immune system. If this so called LLMD steers you in that direction, he is not the real thing.
Low Dose Naltexone will help stop auto immune attacks. Get the book The Promise Of Low Dose Naltrexone.
A low fat vegan diet will help inhibit the biofilm production caused by protomyxzoa. If you have been on abx for years without improvement, then you are not taking the right medication. Try an anti-parasitic drug like stromectol (ivermectin).
Posted by gigimac (Member # 33353) on :
Razzle, I tried to pm you but your box is full. Do u mind sharing how u are taking the flagyl? Alone or with other meds? pulsing?
Posted by Razzle (Member # 30398) on :
Gigimac,
Sorry about my inbox being full; I just cleaned a bunch out.
I'm on IV Flagyl every day. I am also on a low dose of IV Azithromycin (can't go higher, as it messes with my heart rhythm). No, I'm not pulsing. I do better not pulsing.
Posted by opus2828 (Member # 15407) on :
Definitely consider parasite treatment before anything else.
Posted by Rivendell (Member # 19922) on :
What I am reading from Dr. Weil is that it would take about 20,000 times what people normally consume of flouride to get dangerous results.
I just know that since green tea helps me so very much, I will drink it always.
Posted by OtterJ (Member # 30701) on :
I am looking at various genetic conditions that might predispose some of us to variant
inflammation. One of these is TRAP 1-A or TRAP 1-B or, "Tumor necrosis factor receptor-
associated periodic syndrome" Another is Stills disease. It has nothing to do with lyme per se,
but if you have an underlying condition that is activated during infection, than you will respond
to the infection differently than others. These 2 diseases are considered rare, but in the face of
infection possibly we will see more diagnosed cases, particularly in chronic infection. This is
the same for those with the MTHFR gene mutation. Have you had a genetic test done to see if you
are predisposed to problems? I can't remember Jess if you had your hormones tested. This would
be very important, too. Initially, infections in the acute stage will ramp up the
hypothalamic/pituitary/adrenal axis or HPAA axis, but chronic infections will shut this down, which is
why so many people have problems with their cortisol. If you haven't done this, please get those hormones tested.
Posted by Lymetoo (Member # 743) on :
My autoimmune conditions got way worse when my candida got out of control.
Posted by docluddite (Member # 36032) on :
Has anyone tested your vitamin D level?
Posted by Thewino (Member # 39086) on :
Jessica,
This seems like a valid explanation from your physician.
Although one will never know what exactly caused their autoimmune disease to kick-in, this is a decent explanation.
Some think stress, surgery, car accidents, etc....are what causes the symptoms to begin.
In the end, you will need a good Rheumatologist to deal with any autoimmune dysfunctions as they can also do extreme damage to your body.
Be well, Thewino
Posted by jmb (Member # 18338) on :
I used to have low RBC and low hemotocrit, and then I treated Babaeisa. The Fry bug mentioned before is also a blood parasite. Before I'd throw in the towel, which is what you do when you accept "autoimmune" I hope you take a shot at Babesia and/or the Fry bug.