Help! Seeking recommended treatment protocol based on my symptoms

[RU72]

I posted a while back about symptoms that suggest CFS. I wanted to post again, in the hope that by sharing some recent test/lab values and specific symptoms, some degree of confirmation can be provided and direction on which doctor(s) to consult.

Since early childhood I have suffered from a temperamental stomach, chronic anxiety and poor long-term memory. Although I made my way thru college, graduate school and had a good career, I always felt highly anxious -- which is not my personality at all -- and perpetually tired/falling behind.

4-years ago, after feeling completely burned out, I was diagnosed with celiac disease. Unfortunately, strict adherence to a gluten-free diet has actually worsened many symptoms and caused the onset of others. It initially felt like I was going thru withdrawal – which, I gather I was. Follow-up testing have shown that I am faithfully following the diet.

Since the celiac diagnosis, I have seen countless doctors, received a few addt’ diagnosis, including hashimoto's disease and autonomic dysreflexia, and have not been able to work full-time.

Symptoms:

1) Extremely Debilitating Fatigue: which does not respond to any amount of sleep. I wake up each morning feeling hung over -- disoriented, sore throat, head pressure, stomachache, etc. I typically need to take a monster nap every day, just to sort of function. While sleeping does not necessarily help, the alternative is to stay awake, which often is not possible.

2) Brain Fog: This is somewhat difficult to describe, but it feels as though someone is constantly squeezing my head, with the greatest pressure localized near the temples and motor cortex (upper) region. I also have increasing pressure around my cheek bones and a feeling of fatigue in my jaw. The fog itself registers as considerably slowed processing, forgetful, horrible word retrieval/memory, inability to carry a linear thought/process. Sadly, my productivity has been substantially reduced. Honestly, I"m not sure how anyone can properly function and make a living under these circumstances. Hats off to you if you are!

3) Stomachache: This has been a constant throughout my life, but it's only since going gluten-free that the stomachaches have become downright debilitating. I cannot eat or drink anything without my stomach having fits. I have had many GI tests, most of which have provided no relevant information. Recently, however, my integrative medicine doctor ordered a fecal analysis, which did indicate flora imbalances. I already take a lot of probiotics, so not sure what else I should be doing here?

4) Headache: It's constant and ranges from head pressure, to full-on headache.

5) Heartache: I don't know what to make of this and maybe have been too dismissive. It's just a localized sense of discomfort around the heart, as well as reduced sensation (reduced circulation?) around my left shoulder. Hmm? Maybe I should see a cardiologist?

6) Tremors: My hands exhibit constant mild tremors -- though evidently not consistent with Parkinson's or MS; based on a single consult. Also, I am increasingly aware of full-body tremors. It feels as though my body is vibrating -- I'm most aware when I lay down at night.

7: Increasing joint pain and stiffness.

Genetic Tests:

Genetic testing revealed that I have a heterozygous mutation of all 3 MTHFR genes, as well as COMT V158M & H62H, both VDR genes, MTRR A66G, and both CBS genes. I also have a homozygous mutation of MAO-A R297R and BHMT 02, 04, 08. Sound like I did NOT hit the genetic lottery jack pot.

Lab Tests:

Low vitamin-d (though in the 40s/50s w/ 5000 IUs daily); low testosterone; low PTH, elevated TSH & TPO (thyroid); slightly elevated cholesterol and glucose serum; upregulated immune system; out-of-whack neurotransmitters and adrenal fatigue based on a 24-hour adrenal study. Finally, a sleep study suggested that I have mild sleep apnea.


This all seems so surreal to me. I knew that I had some seemingly minor health challenges, but it's as if my body has gone off a cliff in the past few years. I'm sure my environment has not helped either: have an active 3-year old son and a perpetually stressed wife who is not taking my situation well at all. And, as a middle-aged male, I feel the added burden of not being able to properly work and provide for my family. All this said, my current stress level, compared to the past few years, is actually quite good -- as I understand now how destructive it can be and make a daily / momemt-by-moment commitment to be as stress-free as possible.

Anyhow, any treatment suggestions, type of doctor(s) to consult, words of wisdom, etc is greatly appreciated.

 

[minkeygirl]

What I can say is now just treat things symptomatically until you find a doc, who will most likely do a lot of that for you. If your D is low, take D etc. Brain fog is tricky. Good sleep is the best. I always have a level of fog going.

Most is trial and error. I think if all of us here heaped up all the supplements and meds we've tried that didn't work we could fill an ocean.

It's not easy. What made the most difference for me was to stop fighting what was going on, accept it and then do what I could to help myself. Freaking out, for me, only made things worse.

Where are you?

 

[SOC]

Anyhow, any treatment suggestions, type of doctor(s) to consult, words of wisdom, etc is greatly appreciated.

No one here can make treatment suggestions as that would be practicing medicine without a license, which is both illegal and against forum rules.

As for what doctors to consult, I'd suggest you find the nearest ME/CFS specialist (there aren't many) and find out if you actually have ME/CFS. If you do, the ME/CFS specialist will be the best person to give you treatment suggestions.

 

[minkeygirl]

As for what doctors to consult, I'd suggest you find the nearest ME/CFS specialist (there aren't many) and find out if you actually have ME/CFS. If you do, the ME/CFS specialist will be the best person to give you treatment suggestions.

@cbmtl I'm sure @SOC didn't mean to sound so harsh. You need to find someone who is willing to run labs which will help rule out other things and lead you to a diagnosis.

I recently found a NP who is not an ME specialist but knows quite a bit and I'm quite happy with her so far. It's about finding a doctor who is open minded and is willing to work with you, at least in the beginning to get some lab work done. If you have a PCP who will do that, then you are fine. I believe there is a thread here about which labs to get.

Once you have that, then you can plan your next move. There are probably more people on PR that don't have an ME specialist than do. So don't worry about that. Get your labs done first.

 

[Sushi]

@cbmtl

Yes, you have a lot of symptoms which could point to ME/CFS, but you need more testing as these symptoms are common to other diagnoses too.

It is true that we can't suggest treatments but we can suggest that you get more testing. At this point that could be from an ME/CFS specialist or as @minkeygirl suggested, from a sympathetic doctor (often a holistic or functional medicine or someone like that) or NP.

Unfortunately there are not many of them who are knowledgeable enough to know what kind of testing to prescribe and many of the tests that point more directly to ME/CFS are not widely available or covered by insurance.

Do you have PEM (feel much worse the next day or later, after activity, physical or mental)? That is a cardinal symptom of ME/CFS.

Best wishes,
Sushi

 

[Martial]

I would also suggest looking into testing for Lyme, but only done by a lyme literate medical doctor, LLMD. The lab used for testing should also be IgeneX that is the only testing that will be accurate enough to tell if it is an issue.


An LLMD is also able to accurately read results as a CDC negative test with some positive strains is definitely also definitive of infection though other doctors will stop all testing as soon as CDC standards come back negative.


The sickest patients like I was usually test negative because we use all the antibodies in fighting the infection, this is why a blood smear to look for spirochetes instead of antibodies is more accurate but not a whole lot of places do this.

I started off just like you with symptoms that were similar and didn't seek proper treatment, I also had really bad restless leg syndrome, but gradually I seemed to get worse until I had really bad neurological issues that were very similar to M.S. and all kinds of weird brain issues, and cognitive dysfunction.


Finally got proper treatment and testing through a local LLMD who found positive borrelia strands, though a CDC negative on the main test. Since having strands of antibodies either means previous or active infection we started treatment, as of course I was never treated for lyme before so it was not an old infection. We then started treatment and I have been much better lately as a result.



Check into possible methylation protocol's if you want too, as your mutations would warrant some kind of treatment for proper methylation and de tox passageways. Under the care of a literate doctor, Rob Lynch's site is a good place to check out, and Fred, and Rich have good protocols that can be found here.


Of course I am not a medical doctor and nothing I am saying is meant as medical advice, just wanted to inform you of treatment therapies that have helped myself and things to possibly look into being tested for, or treatments that could be discussed with a medical doctor.

 

[minkeygirl]

I think that is only necessary if he's been exposed to ticks, no?

 

[Sushi]

I think that is only necessary if he's been exposed to ticks, no?

The scary thing is that other insects now carry borrelia--mosquitoes, horseflies, fleas--for instance. Also it can be passed from mother to child.

Sushi

 

[Martial]

I think that is only necessary if he's been exposed to ticks, no?

Bartonella can be caused from cat's and there is growing research and studies showing that there are other insects that are carriers of infection, plus the fact that ticks that cause it are so small most of the time they are never seen, the size of an end of a sharpened pencil.


Mycoplasma has other ways of infection by way of certain milk products, broccoli, cheeses, etc. Babesia can also be spread through other insects and this is well proven. There are other recognized separate "co infections" of Lyme such as these and most have actual documented evidence of other means of infection.

If cbmtl has ever been to a place common of Lyme disease then this is even more important, It is not a very easy infection/bug to find unless one gets a bullseye rash which only happens about 30-40% of the time. Even in Malibu, California there has been active proof of Lyme disease which I never even knew of until recently.


It is about 20 minutes from my house, prior to contrary old belief Lyme disease is not just an "East Coast thing".


The testing at IgeneX labs can cover the spectrum of co infections as well so this is a great test to run, and it is definitely worth ruling out if before seeking other therapies that would not clear an underlying infection which could only grow worse, this all needs to be done by an LLMD again though.



Their lab tests that show the specific abnormalities are also consistent with a lot of underlying lyme infection, usually due to internal inflammation, and changes from the bacteria in the system.


I am not stating that they indeed have lyme though, just that it can be a likely possibility, you would definitely want to rule this out as soon as possible because earlier treatment is always better, untreated it can be fatal.



I almost died from heart complications previously to getting treatment myself. I also have the next day after fatigue issues if I push myself too hard on certain days, PEM, exercise intolerance, and other strange fatigue issues is also correlated with Lyme.


I think this is usually due to people with co infections on top of borrelia though, that is why it is not seen in all cases of Lyme. Usually the more co infections a person has the sicker they are, especially on top of opportunistic infections of parasites, tape worms, yeast overgrowth, protozoa, Mold, re activated viruses, etc..


All related to an compromised immune system. With cases of co infections or in certain instances in general Chronic Lyme and Chronic Fatigue syndrome tend to have indistinguishable symptoms between the two.


Though at least it is possible to have testing done to see if Lyme and Co infections is an issue for some, unfortunately not the case yet of Chronic Fatigue with no known Bio Marker tests. It seems like those are well on the way though!

 

[minkeygirl]

Isn't bart a different test? I don't know.

 

[Martial]

Isn't bart a different test? I don't know.

Bart is a common co infection that can happen with Lyme though also transmittable through other means also known as cat scratch fever, I mentioned the IgeneX testing because it covers all possible co infections of lyme, including Bart, Erhlicia, Babesia, Rocky spotted mountain fever, and others.

http://www.igenex.com/Website/


Also to OP it can seem very strange, prior to getting really sick I was in the top 5% of even extreme athletes for endurance, strength, speed, and other traits.


I was strength training 5 days a week and practiced martial arts 5 times a week, pretty intensely but with adequate rest. Never had any energy issues whatsoever, could run, hike, jog, go multiple sparring rounds, and basically just had an infinite supply of energy everyday.



No health issues prior other then having some anxiety issues that I ended up curing using CBT.

 

[minkeygirl]

@Martial Thanks for the info. I was unable to read your post because the paragraphs are way too big. I can only read about 2 to 3 sentences in a row before I need a paragraph break.

I look at your post and my eyes glaze over and everything in my brain go crazy.

 

[Sushi]

Bart is a common co infection that can happen with Lyme though also transmittable through other means also known as cat scratch fever, I mentioned the IgeneX testing because it covers all possible co infections of lyme, including Bart, Erhlicia, Babesia, Rocky spotted mountain fever, and others.

http://www.igenex.com/Website/

It tests only 3 species of Bartonella though. I was negative for Bart on Igenex and positive by PCR.

Sushi

 

[Martial]

@Martial Thanks for the info. I was unable to read your post because the paragraphs are way too big. I can only read about 2 to 3 sentences in a row before I need a paragraph break.

I look at your post and my eyes glaze over and everything in my brain go crazy.

I will edit them for you, sorry about that!

@Sushi

Yes, it is not 100% accurate for everything, but definitely a great test to cover a broad range of possible infections. I have found if there is any positive strands of lyme at all then treatment can cover all possible co infections, given the person uses certain herbal/natural treatment.


Not that antibiotics are inadequate but that there needs to be multiple types of antibiotics used to treat cysts, bio film, and various co infections.


With natural treatment such as Buhner protocol, Cowden, Zhang, Dr. Jernigan, etc. A person can cover a treatment plan that would take care of all co infections at the same time while being much less toxic and with fewer adverse possible effects then traditional antibiotics.


This is all stuff that I would have discussed after finding a positive infection though, I think cbmlt wants to be sure Lyme is an issue before going on a strong protocol to treat it. Of course again, everything under the proper care of a good LLMD as well.

 

[RU72]

Thank you all so, so much for sharing your thoughts.

I do in fact live in the NE and am currently backed-up to woods. I also lived in wooded areas for much of my childhood. My mother was diagnosed with Lyme disease when I was a teenager and my wife ironically was also just diagnosed with Lyme as well. I have been tested for Lyme many times, mostly by ELISA standards, but also the Western Blot -- all negative. However, the tests never revealed any of the strains, just the type of test and a negative result.

I am currently working with an integrative medicine doctor who recently used MDL Laboratories to test me for Lyme and a bunch of co-infections. Again, they all came back negative. Yet...is it still possible that I have Lyme, but because of the duration or other compromising factors, would no longer register positive on any Lyme test? My immune system is clearly compromised and likely has been for a long time. What is the potential damage of undergoing an antibiotic treatment plan with no conclusive diagnosis?

Like Minkeygirl, my brain is becoming more and more fatigued, which makes helping myself that more challenging. But, my brain has felt fatigued for most of my life. Both of my parents are wicked smart -- just wondering if some/most/all of the cognitive stuff can be attributed to long-term Lyme, without some of the other common symptoms. Clearly, I may be reaching here.

As it is, I plan to continue to work the integrative medicine doctor. He recently had me submit blood samples for a pretty extensive ALCAT panel and micronutrient testing. I think he's on the right track. In tandem, I also set-up an appointment with a LLMD and finally, plan to make an appointment with Dr. Podell, who, from what I have read, is a good ME doctor.

I am may taking on a bit too much at once, but I have been sick for so long and no longer have the patience to watch my life slowly slip away. It's only recently that I've realized that for most of my life, I have operated sub-optimally.

 

[Martial]

Thank you all so, so much for sharing your thoughts.

I do in fact live in the NE and am currently backed-up to woods. I also lived in wooded areas for much of my childhood. My mother was diagnosed with Lyme disease when I was a teenager and my wife ironically was also just diagnosed with Lyme as well. I have been tested for Lyme many times, mostly by ELISA standards, but also the Western Blot -- all negative. However, the tests never revealed any of the strains, just the type of test and a negative result.

I am currently working with an integrative medicine doctor who recently used MDL Laboratories to test me for Lyme and a bunch of co-infections. Again, they all came back negative. Yet...is it still possible that I have Lyme, but because of the duration or other compromising factors, would no longer register positive on any Lyme test? My immune system is clearly compromised and likely has been for a long time. What is the potential damage of undergoing an antibiotic treatment plan with no conclusive diagnosis?

Like Minkeygirl, my brain is becoming more and more fatigued, which makes helping myself that more challenging. But, my brain has felt fatigued for most of my life. Both of my parents are wicked smart -- just wondering if some/most/all of the cognitive stuff can be attributed to long-term Lyme, without some of the other common symptoms. Clearly, I may be reaching here.

As it is, I plan to continue to work the integrative medicine doctor. He recently had me submit blood samples for a pretty extensive ALCAT panel and micronutrient testing. I think he's on the right track. In tandem, I also set-up an appointment with a LLMD and finally, plan to make an appointment with Dr. Podell, who, from what I have read, is a good ME doctor.

I am may taking on a bit too much at once, but I have been sick for so long and no longer have the patience to watch my life slowly slip away. It's only recently that I've realized that for most of my life, I have operated sub-optimally.

I would say there is a extremely likely chance that Lyme is the issue then, again IgeneX is the only lab sensitive enough to give you a good answer and that is IF you are not so immuno compromised that the antibodies have not already been used up.

That is why the blood smear is more accurate but even then catching the spirochetes is never 100%. It is just unfortunate in the sense but Lyme disease just does not have very good testing to catch it because it can be such an invasive pathogen.

Though with a blood smear and an IgeneX test if you have even the faintest sign of antibodies then this would prove that the bacteria is in fact in your body.

With what you have so far I would not use antibiotic therapy, there are a lot of side effects and adverse effects. Antibiotics are very toxic on the body as well. You want to be absolutely sure lyme is an issue before jumping on them.

What you can do is use an herbal protocol right now like Dr. Buhners, The Cowden Protocol, Dr. Zhang, Byron white formulas, or Dr. Jernigans protocol. These are all herbal protocols so not as risky in effects and just as potent as antibiotics.

In fact over 70% of the people with chronic lyme issues I have talked to always talk about taking years, and years of antibiotics including I.V. and not noticing much improvement, then slowly but surely with an herbal approach, and proper de toxing, as well as supplementation of the necessary things they get better. Though sometimes it can take up to a year to really see results for some.

This is because it is not about killing the bacteria alone, you need immune support, oxidative support, something to stop the damage to the body tissues, cyst busting, and bio film busting herbs or enzymes, things to stimulate the lymphatic system, something to help proper blood flow and perfusion, and De toxing all the toxins, as well as addressing any traumas, or emotional issues.

Getting better is literally a lifestyle change and making healthier choices, that is often what is necessary. Keep in mind parasites are also a factor, as well as sometimes tape worms, and other opportunist infections, mold mycotoxins can be another issue for some, as well as yeast. You need to do something that cleans your inner house entirely so to speak.

Hope this all helps! Again, don't start any protocol or take my info as medical advice, just speak about this with your doctor and get the okay before jumping into anything on your own!

Dr. Buhner's site - Healinglyme.com

Dr. Jernigans - Hansacenter.com

Dr. Cowden -Nutrimedix.com

The other ones I don't know off the top of my head but you can find them off google, also betterhealthguy.com is a great site with plenty of info and resources you can check out!

 

[Hip]

For anxiety symptoms, the supplements on this thread have worked very well for a number of people:

Completely eliminated my severe anxiety symptoms with three supplements!

 

[Sea]

Since early childhood I have suffered from a temperamental stomach, chronic anxiety and poor long-term memory. Although I made my way thru college, graduate school and had a good career, I always felt highly anxious -- which is not my personality at all -- and perpetually tired/falling behind.

4-years ago, after feeling completely burned out, I was diagnosed with celiac disease. Unfortunately, strict adherence to a gluten-free diet has actually worsened many symptoms and caused the onset of others. It initially felt like I was going thru withdrawal – which, I gather I was. Follow-up testing have shown that I am faithfully following the diet.
...
Genetic Tests:

Genetic testing revealed that I have a heterozygous mutation of all 3 MTHFR genes, as well as COMT V158M & H62H, both VDR genes, MTRR A66G, and both CBS genes. I also have a homozygous mutation of MAO-A R297R and BHMT 02, 04, 08. Sound like I did NOT hit the genetic lottery jack pot.

Anyhow, any treatment suggestions, type of doctor(s) to consult, words of wisdom, etc is greatly appreciated.

As you are probably aware the Celiac disease has set you up for poor absorption of nutrients over a lifetime thus far. Coupled with genetics that mean your body does not do a good job making methylfolate and has some difficulties with recycling B12 it is no wonder that many of your symtoms fit with nutritional deficiencies.

That doesn't mean that is all that is going on but it could be a big part of it. A regular doctor could test B12 and folate, but their answers are not necessarily complete. They can tell if you have enough in your diet and are absorbing nutrients, but not necessarily whether you are transporting, converting and utilising effectively. Other tests like red blood cell size and levels of homocysteine are probably better indicators.

As you have gotten worse on the gluten free diet is it possible that there is something you are eating now that you were not before that could be causing problems for you? Many people switch to soy based products only to discover it is as bad for them as gluten.

Probiotics come in many different varieties and sometimes it can take some trial and error to find one which is a good balance for you.

I agree that an integrative doctor is a good choice.

 

[RU72]

Thank you again for all of the kind words and suggestions. I am seeing my integrative medicine doctor tomorrow and will hopefully have the results from my ALCAT food panel and micronutrient testing.

 

[RU72]

Just an update - I couldn't understand the results of my latest Western Blot test, so I called MDL Labs, where I had the test done. Apparently, even though there was a slight detection of band 23 activity (@ 43%) it didn't meet the CDC's definition of a positive assay. Hmm...Interesting.