Please help! A rare combination of diseases: multiple sclerosis+ankylosing spondylitis+lyme disease.

[Sve989]

Hello,

My name is Svetozar Chakalov, I have been suffering from Ankylosing Spondylitis for 20 years, and for the past 10 years I have been suffering from many neurological problems (numbness in the extremities, muscle cramps, vertigo, memory loss) last year I was able to have a Nuclear Magnetic Resonance scan because all the neurologists during my years explain that my symptoms are from Spondylitis, the results show the presence of multiple lesions in both the brain and spine and they immediately concluded that I have Multiple Sclerosis, which I still do not agree with and will explain why.
My Ankylosing Spondylitis treatment is in the standard therapy with Biologics namely tnf alpha inhibitors, 2008-2018 using Enbrel (etanercept), discontinued due to frequent iridocyclitis and replaced with Humira (adalimumab) 2018-2023. and discontinued earlier this year due to my discovery of MS, this type of drug is off-limits for neurological disease. Immediately after stopping Humira, my doctor prescribed the most advanced treatment, Cosentyx (IL 17A inhibitor) for 6 months without any visible result.

So I decided to go back and recall everything I've read about the disease, namely that the cause of the inflammation and the increase in symptoms over the years was caused by bacteria in the small intestine when SIBO was present. As I mentioned 15 years I was treated with immunosuppressants, but the problem comes from the fact that TNF drugs in combination with viruses (epstein barr virus which I have) and bacteria (borrelia, Bartonella in my case) cause demyelination, I most likely do not have MS and it is caused by the long-term use of both drugs.
I haven't been using biological medications for four months now, and all the neurological symptoms have disappeared, but unfortunately, I still don't have the solution for Ankylosing Spondylitis and my condition is getting worse every day.
My observations are, that many people went into remission with the right reduction of carbohydrates, gluten, starch, and reduction of PUFA, but for me, it is not working at the moment and I am only supported by Aspirin at the moment, without it I can't even move.
- I am currently taking aspirin twice a day 300-800 mg dose, I use famotidine to control serotonin, magnesium sulfate, zinc, niacinamide, progesterone, vitamin C, and D3+K2.
- I have used (minimum 2 months): liposomal curcumin, white willow bark, monolaurin, lion's mane, pau d'arco, liposomal resveratrol, liposomal coq10, royal jelly, Oregano Oil, Berberine in order to reduce inflammation and regulate intestinal flora, but without any result.

Doctors in my country don't know what to do and none of them want to help me, I am really desperate, my condition is worsening every day. Lowering the pain is my main goal at the moment.
P.S. English is not my native language so hope you can understand me.

 

[Rinse & rePeat]

Hello,

My name is Svetozar Chakalov, I have been suffering from Ankylosing Spondylitis for 20 years, and for the past 10 years I have been suffering from many neurological problems (numbness in the extremities, muscle cramps, vertigo, memory loss) last year I was able to have a Nuclear Magnetic Resonance scan because all the neurologists during my years explain that my symptoms are from Spondylitis, the results show the presence of multiple lesions in both the brain and spine and they immediately concluded that I have Multiple Sclerosis, which I still do not agree with and will explain why.
My Ankylosing Spondylitis treatment is in the standard therapy with Biologics namely tnf alpha inhibitors, 2008-2018 using Enbrel (etanercept), discontinued due to frequent iridocyclitis and replaced with Humira (adalimumab) 2018-2023. and discontinued earlier this year due to my discovery of MS, this type of drug is off-limits for neurological disease. Immediately after stopping Humira, my doctor prescribed the most advanced treatment, Cosentyx (IL 17A inhibitor) for 6 months without any visible result.

So I decided to go back and recall everything I've read about the disease, namely that the cause of the inflammation and the increase in symptoms over the years was caused by bacteria in the small intestine when SIBO was present. As I mentioned 15 years I was treated with immunosuppressants, but the problem comes from the fact that TNF drugs in combination with viruses (epstein barr virus which I have) and bacteria (borrelia, Bartonella in my case) cause demyelination, I most likely do not have MS and it is caused by the long-term use of both drugs.
I haven't been using biological medications for four months now, and all the neurological symptoms have disappeared, but unfortunately, I still don't have the solution for Ankylosing Spondylitis and my condition is getting worse every day.
My observations are, that many people went into remission with the right reduction of carbohydrates, gluten, starch, and reduction of PUFA, but for me, it is not working at the moment and I am only supported by Aspirin at the moment, without it I can't even move.
- I am currently taking aspirin twice a day 300-800 mg dose, I use famotidine to control serotonin, magnesium sulfate, zinc, niacinamide, progesterone, vitamin C, and D3+K2.
- I have used (minimum 2 months): liposomal curcumin, white willow bark, monolaurin, lion's mane, pau d'arco, liposomal resveratrol, liposomal coq10, royal jelly, Oregano Oil, Berberine in order to reduce inflammation and regulate intestinal flora, but without any result.

Doctors in my country don't know what to do and none of them want to help me, I am really desperate, my condition is worsening every day. Lowering the pain is my main goal at the moment.
P.S. English is not my native language so hope you can understand me.

I have read some about Ankylosing Spondylitis, and understand it to be a spinal infection, and that a tetanus shot, and I am thinking maybe other vaccines could be a cause. I feel awful sensing your desperation. I hope we can get some conversation going for you…

@Carrum said….
“I had a spate of health problems for several years that were all related to my digestive system. One of these was a klebsiella problem. The klebsiella caused my lower back to be really stiff. I had to lay in very warm water every morning to help loosen my back so I could get myself ready for work. I was told that the klebsiella problem was caused by eating starchy foods. I wasn't eating any grain products but I was eating potatoes so I cut them out and my back became much more supple within just a few days. I started eating potatoes again about 2 years ago and have had no problems with klebsiella. I never eat them cold and they are always well cooked.”

Advice On Ankylosing Spondylitis

I was diagnosed with ankylosing spondylitis a few years ago. Since there is no known cure to mainstream medicine I'm looking at any possible new ways of thinking that might help me. I was wondering if Ray Peat had anything to say, ever, about this condition and what advice he might have. I've...

raypeatforum.com

 

[Sve989]

I have read some about Ankylosing Spondylitis, and understand it to be a spinal infection, and that a tetanus shot, and I am thinking maybe other vaccines could be a cause. I feel awful sensing your desperation. I hope we can get some conversation going for you…

@Carrum said….
“I had a spate of health problems for several years that were all related to my digestive system. One of these was a klebsiella problem. The klebsiella caused my lower back to be really stiff. I had to lay in very warm water every morning to help loosen my back so I could get myself ready for work. I was told that the klebsiella problem was caused by eating starchy foods. I wasn't eating any grain products but I was eating potatoes so I cut them out and my back became much more supple within just a few days. I started eating potatoes again about 2 years ago and have had no problems with klebsiella. I never eat them cold and they are always well cooked.”

Advice On Ankylosing Spondylitis

I was diagnosed with ankylosing spondylitis a few years ago. Since there is no known cure to mainstream medicine I'm looking at any possible new ways of thinking that might help me. I was wondering if Ray Peat had anything to say, ever, about this condition and what advice he might have. I've...

raypeatforum.com

Thanks for the suggestion, I was on almost 1 year on low-starch and gluten-free diet without any change in my symptoms, the real problem with me is that every year my inflammation spreads to different joints and today I have inflammation in my back, hands, knees, ankles and hip joints and the most painful symptom which no one can explain so far are muscle cramps on my back every 5-10 min which are so painful I barely can even move.

Bacteria is the main reason for inflammation the problem is that it is hard to say which one is it, I don't have Klebsiella. In this presentation, they manage to identify some of them that are common in RA, AS, and Cronh:
View: https://www.youtube.com/watch?v=UydmjBEMVPM&t=1571s

 

[Ania]

Hi,
I had problems with joint pain for many years. It was not as severe as in your case, but I suffered for many years and was diagnosed with Rheumatoid Arthritis. After many years I found out that I can control it with diet. I know it is not very popular here, and I would not advise it for a long period of time, but If I were you I would try Carnivore diet for one month and see what happens. Thousands of people claim to “cure”their autoimmune conditions on carnivore. I believe it is just ultimate elimination diet, that is why it works for so many people. If it helps, you could start adding back foods one at a time and see how you react. I would do it on beef and water, no eggs and dairy. I live now on meat, eggs, seafood and fruits. But I live normal life without suffering. Sure, this might not work, but I hear your desperation and I think it just one of many things you might try. It is relatively simple and not carrying much risk short term.

 

[PopSocket]

Hello,

My name is Svetozar Chakalov,

Hello Svetozar!

Some tips that are in no way supposed to be the truth but what I learned dealing with the medical system and immune/inflammation issues:

The doctors in Bulgaria are clueless about autoimmune issues and often misdiagnose them. I would highly suggest you to make an appointment with any doctor from Lupus Center London in order to get proper diagnosis. Dr. Arvind Kaul is the best doctor there. Costs 280 pounds per meeting and you can do it online. You might need two or three.

That being said - even the best doctors from the best medical facility will not "cure" you as they will put you on the right poison to manage symptoms. But they will point you in the right direction when it comes to what exactly is wrong("diagnosis"). The Bulgarian doctors simply do not understand those issues and they often admit it and do the wrong blood tests, the proper ones - most never heard of them. I've seen them all btw and speaking from experience. Total halfwits. Many of them are NPCs without a soul. Finding the proper doctor to diagnose you and offer you the proper "medicine" when things go wrong is important to keep you functional and alive while you do your things to properly heal.

1. I see you are not using vit E (best by haidut) which is a must when it comes to immune and inflamation issues from my experience. Helps tissues become more resilient to the immune response. Also great when trying to get rid of PUFA which is a major problem.

2. When there are so many issues one must absolutely give the Liver special attention as the first thing before doing anything else in my very humble opinion. Coffee enemas are a good way to go about it AND red light therapy device pointed at the liver a few times a week. As well as the thymus. the coffee must be specially made for this purpose - robustahealth Detox coffee. You can find it in Bulgaria. It is heavy metals free, no fungus or pesticides etc etc the Liver is key.

One can add some strategies to remove heavy metals like gentle short courses of Cilantro or some other strategy that makes sense to you.

3. Curcumin and many other herbs are usually counter productive. Among the few exceptions is black seed. If you can get the active ingredient without the oil= best.It works similar to methotrexate in terms of effect without the sides when it comes to lowering inflammation. I would only use when things get BAD.

4. I would not go on Carnivore diets as they only mask the issues by increasing cortisol. Lowered endotoxin is also a benefit which can be achieved by a clean Ray Peat inspired diet, Short term can be very beneficial only if dealing with gut issues though. I would look into mushrooms as the best way to clean the gut combined with shallow rectal pure water enemas after each go to the toilet to clean the rectum and not reabsorb the poop/poison and overall keep the system as clean as possible.

Some might suggest antibiotics, I would look into Chlorine Dioxide which is available in Bulgaria even though the authorities did too many attacks on the main manufacturer in Bulgaria during the "pandemic" and shut down his business. There are other ways to find it now locally even though google and the major cell phone operators have blocked the site of the current supplier. I would not overdo it as it can cause lower t4 for a short period of time. Just enough to clean the gut a bit and keep the buggers in check.

5. Check your thyroid ! including rt3, measure temperatures and see if there is some problem there. Super important.

6. Grounding , methylene blue, sunlight, very clean water,shower filter and free of harsh chemicals soap/shampoos are another things to optimize.

Wish you a successful journey to a quick recovery !

 

[Rinse & rePeat]

Thanks for the suggestion, I was on almost 1 year on low-starch and gluten-free diet without any change in my symptoms, the real problem with me is that every year my inflammation spreads to different joints and today I have inflammation in my back, hands, knees, ankles and hip joints and the most painful symptom which no one can explain so far are muscle cramps on my back every 5-10 min which are so painful I barely can even move.

Bacteria is the main reason for inflammation the problem is that it is hard to say which one is it, I don't have Klebsiella. In this presentation, they manage to identify some of them that are common in RA, AS, and Cronh:
View: https://www.youtube.com/watch?v=UydmjBEMVPM&t=1571s

I think for any bacterial issues I would be eating garlic, coconut oil and raw Manuka or buckwheat honey daily. I have no experience with it, but I have read that oil of oregano kills a bunch quick.,

 

[Peater]

Have you ever tried boron supplementation? That's meant to be good for arthritis.

I would also at least try SSKI and selenium, but that isn't Peaty unless you're only taking 150mcg. (I take 150 - 200mg.)

 

[StephanF]

I did a search on mmstestimonials.co (without the ‘m’ at the end. There are some reports, where people had improvements using chlorine dioxide drops. It comes in two bottles, one contains sodium chlorite (NaClO2) the other an acid, citric acid or a 5% solution of hydrochloric acid. You mix equal amount of drops, let it react and then add water and drink it. Jim Himble’s ‘Protocol 2000’ suggests three activated drops (three drops from each bottle) each hour for a maximum of 8 hours. Do not use more than 24 activated drops per day. I never used that much but I and my family have used it many times over the last 20 years.

Search - MMS Testimonials - Master Mineral Solution, Miracle Mineral Solution

Master Mineral Solution Testimonials (MMS Testimonials)

mmstestimonials.co

 

[Sve989]

Thanks, everyone for the suggestions!

@PopSocket - got some Vit A+E today and started a high dose of Vit D3+K2, just found I have some new pathogens and will start a months-long protocol, hope they are the problem for the high inflammation.
@Rinse & rePeat - tested Garlick a few months ago the problem is that the active ingredient allicin, not the Garlick itself can kill bacteria but it is not available in my country at high doses, oregano oil is great still using it but has no effect so far.
@Peater - yes I tested almost every available supplement that I can buy with no luck so far, The only good effect I got from Cannabidiol but is too expensive for me 50-55$ for around 5-8 days max, and still Aspirin is much stronger in my case.
@StephanF - Trying to find chlorine dioxide at the moment, will try it thanks!

 

[StephanF]

Thanks, everyone for the suggestions!

@PopSocket - got some Vit A+E today and started a high dose of Vit D3+K2, just found I have some new pathogens and will start a months-long protocol, hope they are the problem for the high inflammation.
@Rinse & rePeat - tested Garlick a few months ago the problem is that the active ingredient allicin, not the Garlick itself can kill bacteria but it is not available in my country at high doses, oregano oil is great still using it but has no effect so far.
@Peater - yes I tested almost every available supplement that I can buy with no luck so far, The only good effect I got from Cannabidiol but is too expensive for me 50-55$ for around 5-8 days max, and still Aspirin is much stronger in my case.
@StephanF - Trying to find chlorine dioxide at the moment, will try it thanks!

Chlorine dioxide is a water sanitizer, maybe you can find it under this keyword. If you know a pharmacist, maybe he can help you order it from some chemical supplier. It is available in Germany from nulife.de, named 'Aquapur'. They also send to other European countries, you may want to check with them if they can ship Aquapur to Bulgaria. Good luck!

 

[PopSocket]

Thanks, everyone for the suggestions!

@PopSocket - got some Vit A+E today and started a high dose of Vit D3+K2, just found I have some new pathogens and will start a months-long protocol, hope they are the problem for the high inflammation.

I am not sure about the big dose of vit A. Did you get the E and k2 from the Bulgarian supplier of Haiduts products ?

 

[youngsinatra]

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