My story and symptom management

[Michal]

Hi everyone !
I just joined but after reading only a few threads I have to say I admire amount of energy and effort you guys put into fighting ME/CFS/FM and trying to find links between different deceases that could be causing it. Hopefully you will get some useful information from my story and perhaps have an idea of what could help in my case.

My health problems started about 16 months ago with what seemed like some kind of a mild viral stomach flu. At the time I was 37, at the top of my career, training and MTB racing and also a lot was going on in my personal live - reflecting back to this I see that I was over taxing myself greatly and the triple hit (mental + physical + health stress) was probably what tripped a circuit breaker in my body and I got sick.

First I ignored the symptoms thinking it will go away as usual but after a few weeks it was getting worse. I was very tired although at the same time alerted and couldn't get a rest (broken fight-or-flight off switch ?). I had sub-febrile temps every day, elevated blood pressure and tachycardia - it felt like a flu from hell that doesn't go away. I was going from one medical specialist to another but they could not pinpoint what was causing the symptoms. There were small discrepancies in blood tests but nothing specific and eventually GP gave up and send me to psychiatrist. He gave me Remeron which helped with the sleep but he did not find anything mentally wrong with me. At the time I was very angry with the doctors for saying that I was completely fine and making me look like an idiot. I refused to do nothing and let this thing slowly take my life away. My background is in computer science which I guess helped me to look at this as a problem that I can solve by finding all available information and connecting the dots myself. I also found better doctors who didn't think I was crazy and actually started to treat what they could.

Fast forward to now, I'm much better compare to 12 months ago and I'm able to manage some of my symptoms:

Sleep / anxiety / panic attacks - I had a bad experience with SSRIs and SNRIs (made me even more agitated) but Remeron worked for a while for sleep. I switched to Lyrica (Pregabalin) and it was a huge relief for both sleep (more refreshing) and agitation (big decrease in a feeling of a persistent physical stress). Recently I started getting tinnitus which could be a side effect of a longer use of Pregabalin so thinking about trying something else (any suggestions ?).

Low energy / fatigue / PEM - I tried various supplements but didn't find anything with a lasting effect. Then I found a special diet programme called Metabolic Balance (http://metabolic-balance.us/). It's a science backed individual nutrition plan focused on sustainable weight loss and restoring metabolism. I saw a big improvement in overall health after just 1 month on this diet (visceral fat rapidly down and muscle mass up) and a huge increase in my energy (I was able to go to work every day without crashing on my couch every evening). Now I'm 8 months on this diet and see this as a big turning point in getting better. I still have PEM from time to time but not on daily basis.

IBS / digestive issues - Metabolic Balance diet and taking multiple probiotics every day helped with this but still having some issues with gastricis and possibly Helicobacter Pylori. What I found useful was to get a PCR based analysis of my gut flora from IBS Treatment Center (https://ibstreatmentcenter.com/).

Tachycardia / high BP / POTS / hyperlipidemia - I manage this with a minimum dose of Bisprolol (beta blocker) and Pregabalin (CNS depressant) seems to also have a positive effect. I also take Tulip (Atorvastatin) for high cholesterol. It's important that ECHO and EKG did not show there is anything wrong with my heart so I think these issues could be a consequence to the jammed Fight or Flight response (via HPA axis).

Flu like symptoms / sub-febrile temps - blood tests showed potential reactivation or chronic infection of Chlamydia pneumoniae which we treated with Doxycycline and Minocycline for 3 months. It helped but I still have sub-febrile temps and Cpn antibodies raised although the bacteria is not detected from blood by PCR and my CRP is low. I also have raised antibodies to herpesviruses (VZV and HSV1) which we treated with Valtrex (short term) without much effect. Despite some progress, this is by far the biggest problem and limitation right now. Blood tests look like my body is fighting some virus (herpes?) or other intracellular pathogen (Cpn?) but can't clear it. I have low neutrophil and high lymphocytes %, high CD8+ %, high IgA and low CRP. I also have p41 IgG positive on the Lyme WB although both ELISA and PCR came out negative (cross-reactivity with Helicobacter ?). I'm not sure what more I can do about this one.

Chest pain - I thought this could be linked to the heart problems but it's not the typical angina that gets worse with the exercise and spreads to arms. It's more like Costochondritis and possibly also linked to Cpn as it got better after antibiotic treatment.

Looking back at the huge list of health issues that are largely unrelated and I never had prior to this I'm more and more convinced that dysregulation of the HPA-Axis is the main block to full recovery in my case.

Thanks for reading. Any suggestions are appreciated

Michal

 

[Merida]

@Michal
Thanks for sharing. Seems you have made progress in tearing this thing apart and consequently got positive results. This mild viral stomach flu that started things - could this be an Enterovirus? Remy knows more about that than I do. Did you have any odd rashes? Dr. John Chia in Torrance, CA seems to be the expert in this Enterovirus/CFS area.

Yes, I have elevated antibody titers to a number of organisms - Herpes viruses, C.pneumoniae, and Lyme Borrelia ( 5 positive bands in western blot - known tick bite 2010) . So what organism is really causing symptoms ? I found the work of Alan McDonald, MD, Harvard Brain Bank, Pathology, interesting. He discusses multiple chronic infections. But I am just confused on this whole matter, but thinking it is critically important. Hip has put up info on Dr. Martin Lerner's ideas and protocols. All very interesting, but still hard to know exactly what path to take unless that initial viral infection is identified?

I also did not do well on the usual SSRIs/ SNRIs but did very well on Wellbutrin for 6 years until it stopped working. It regulated sleep, GI function, energy, mood. Great! Had to start low dose in am, no long acting formulas. Did not sleep for first 4-5 days, then everything balanced and I did well. Nuvigil is helpful now in low doses on occasion.

 

[pbyr]

Michal: Many of these symptoms are based on high adrenal activity - the adrenal activity is arising from an immune event. The most likely guess would be a gut bug which could be viral as Merida suggested but other organisms can cause problems such as rogue gut bacteria, protozoa parasites, worm/cestode infections. Fungal/yeast/mold could be another option.

The gastro tract is highly suspectible to infection and most of the immune system is present there (70%). Based on the adrenal activity, I would suspect bacterial, protozoa or other parasite issues. The adrenals respond to infection but normally the adrenals tend to be dormant with viral infections, while becoming enraged during the other infections.

Magnesium loss occurs with high adrenal activity and there are some typical signs of mag deficiency including the Tachycardia / high BP / POTS / hyperlipidemia. Other nutrients are lost as well including b vitamins, vitamin c etc. Infections put heavy tolls on the body.

Yes, the dysregulation of the HPA axis is present and most likely due to immune activation, kill the pathogen and the HPA axis will revert to normal.

 

[Michal]

Thanks Merida and pbyr, your comments are spot-on ! Everything started with the stomach flu like symptoms so i explored this path initially - Colonoscopy and EGD came back as normal although the report noted a blush of redness in the mucous membrane which would be a sign of inflammation. My ordinary gastroenterologist performed biopsy but no infection was detected in the samples. He closed it as nothing to worry about but I doubt he tested for Enteroviruses. Slowly after onset of symptoms I had an atypical rush in my abdomen which could point to Enterovirus or could be reactivation of VZV (also showing in antibodies). I'm a bit skeptical about bacterial infection because after 3 months on Minocycline the CRP went down almost to zero but then again my Cpn antibody titers went up after it so it could be multiple infections going on at the same time.

I don't have much experience with taking antiviral on antibiotics for a long term but I would be careful as it could make things worse by destroying the gut flora. What really helped me with inflammation except antibiotics was Sucralfate (protects mucous membrane) and PM Chamydil Extra (food supplement with supposed antibacterial and antiviral action - https://www.purusmeda.cz/pm-chlamydil-extra-60-tbl).

 

[pbyr]

Unfortunately, there are a multitude of infectious agents that can cause problems, meaning that testing is hit or miss. In my case, the suspect was a protozoa parasite, this threw me into a severe HPA mess.

I have steered clear of pharma (which is my opinion) and opted for natural antiviral, antibiotics. I use a wide sweep approach which means I use naturals that have a broad spectrum of killing power (e.g. could address viral, bacterial, protozoa) and I use a few of these. Examples of this would be black seed, neem, caprylic acid (coconut) along with some naturals that inhibit resistance.

 

[Not dead yet!]

Sleep / anxiety / panic attacks - I had a bad experience with SSRIs and SNRIs (made me even more agitated) but Remeron worked for a while for sleep. I switched to Lyrica (Pregabalin) and it was a huge relief for both sleep (more refreshing) and agitation (big decrease in a feeling of a persistent physical stress). Recently I started getting tinnitus which could be a side effect of a longer use of Pregabalin so thinking about trying something else (any suggestions ?).

I'm really kind of weak now, but to this I can speak.

I also have terrible reactions to SSRIs and even TCAs, usually agitation just like you said. It's impossible for me to sleep if I am taking any of them. Lyrica and gabapentin had little or no effect for me, possibly a bit of an emotional lift from gabapentin and a bit of a calmness from lyrica. Not enough to justify the cost. Benzos are cheaper and work better for me. However, I no longer use them.

The only thing that helped me with the constant feeling of an alarm in my body was figuring out the thyroid/celiac connection. For reasons I may explain later, I had no access to good medical care until after the age of 10, and even after that my mother feared doctors, so I'm one of the few in my family to have heard of the word Celiac and I'm slowly trying to teach my family about it because I think we genetically all have this, or most of us. Until recently I had no chance to find this out. Once I knew the problem and was on the GF diet (converted the kitchen etc), the feeling of having to hold on to my panic constantly completely stopped.

The only other diet that ever did that for me was ketogenic. But now I suspect that was because the intake of gluten was so very low. And eventually I developed low blood sugar that did not settle but fluctuated painfully.

There is a funny website (below), but it's also serious. However no doctor will tell you about it because they don't want to be seen having a sense of humor about mental problems. The website is old and is getting out of date, I always have to add a security exception for it. If you're worried about it for security reasons the web owner is Jarod Poore, you can search for him, he's a colorful personality.The website: https://www.crazymeds.us/pmwiki/pmwiki.php/Main/HomePage

A typical post from him on facebook: https://www.facebook.com/BrandCrazyMeds/posts/1038568956235919 (dare ya to read that and not laugh )

That said, sleep is not a mental problem, it's just that those with problems like that, if they are confident about their lives, can be very helpful in such matters. Because their problems can cause insomnia.

The insomnia forum there is top rate in my opinion. They suggested I try seroquel and it worked. They explained it could be used in small doses to help sleep. At the time it was the first time I'd slept at night for over 2 years, and I didn't want to go back to ambien because it's basically a benzo and they sensitize me for headaches. I was afraid to discuss it with my doctor because I was afraid he'd say Ambien again.

Another thing that helps with refreshing feeling of sleep for me is choline. When I researched why that was, I found out that people who like to do "lucid dreaming" use high doses of it. I was taking moderate doses to help my liver. It helped both my liver and my sleep quality, though not quantity.

There is a connection between adrenaline and thyroid function. And one between having celiac and having low thyroid function. So here's what happened to me: I had celiac undiagnosed, and years went by and my thyroid became hypothyroid, which made my adrenaline higher, so I was exhausted and wired at the same time, all the time. The fix was the gluten free diet for me. And my adrenals are going to have to recover. But the tired/wired has reduced or fully stopped for me. Now I find myself keeping myself awake so that I can do the things I missed for years.

Hah, that's dangerous too. But we are all human.

Edit: I'm not saying I don't have CFS, but with the resolution of the Celiac I may find out I still have problems or I may have provided what my body needed to fight off whatever it was. I certainly had/have overactive ordinary viruses. There is a noticeable quality of life improvement whenever I take anothe r3 or 6 months course of Valcyclovir. That wouldn't happen if my body were able to deal with it, so there is ongoing lack of proper immune response.