Disability #3 since late 2006 begins today

[MichaelTampa]

What can one say, at least it's not a new and shocking experience for me. Really, I'm healthier now than I have been in years, antifungals are giving me back a lot of energy and much better digestion. But, they have done nothing for sensitivity to fluorescent lights and wireless devices. With new installation in late October of wireless network devices at work, I was struggling mightily to get through the week and get a little work done, and barely recover by the end of the weekend. The level of microwaves from these devices increased without any reason known to me last week on Monday, and the result, after a few hours to a day of being there, is I basically can't think through an issue or have a conversation, really a pretty serious impairment on memory and concentration and that kind of stuff. But here I am, at home indefinitely, and feeling pretty good. I have asked for accomodations at work, such as shielding from the devices, there are other choices too. Really, the leadership role I have does require me to be in the building to do my job. So, with that a requirement of the job, I really am unable to do my job with my health as it is, and without accomodations. I had sought help from the national association for Tourette's (is it TSA, don't remember right now) for the perfumes months back, they truly were of no help at all.

 

- it's the end of the world as we know it and I feel fine?

- money for nothing and chicks for free?

- you ever get high, Joel?

 

Well, whatever phrase is right, it is a strange situation, indeed.

 

On the serious side, had phone consult with Dr. K. He believes from my symptoms I really am a bit of a combination of pediatric onset and adolescent/adult-onset, but more on the adolescent/adult-onset side. He also believes it is mycoplasma pneumonia, not strep, for me (PANDAMP? PITAND-MP?). Yes, it's actually true, MP really are my initials... Blood test does show IgG for myco.pneu. in the "high (indeterminite)" range, and he considers that but is looking also at symptoms and history. He had a pretty positive outlook. Said to cut out the vitamin A, beta-carotene, selenium, and niacin, as they can increase cranial pressure, for a couple weeks, then start with trial of biaxin antibiotic for 2 weeks. If it works, finish 1 month and I'm healed. If it doesn't, use 5-day steroid burst to demonstrate inflammation, and then go to augmentin and be healed in 1 month. He says no analyzing this symptom here and this change there, if these things work, I will wake up and be a new person, it will be unbelievably obvious to me or anyone who knows me.

 

I do definitely recommend going the route of one of the experienced PANDAS people, of which Dr. K. is one. Amazing to see the questions asked and conclusions made, it's obvious the experience really helps.

 

Michael

[mama2alex]

Michael,

 

I'm really sorry this has happened. I don't remember all your history - have you been to a DAN doctor? This might be a good route, alongside your work with Dr. K. I was diagnosed with mercury poisoning some years back, and had terrible memory loss -also to the point where it became very difficult to have any more than a simple conversation. The DAN doctor was amazing and helped figure it all out - food allergies, toxicity, gut issues, etc.

 

Also, I'm not sure what your work is, but if you are already in a leadership role, could you consider opening up a consulting practice from home? That way, you can have much more control over your work environment(s).

[MichaelTampa]

mama2alex,

 

I have not been to a DAN doctor yet. My local MD is an environmental physician, though, and probably has similar tools. He is open to chelation, we did the urine test to see kidney function first, which I believe is a standard test before you start chelation. Still waiting for results on that test. My memory and concentration issues really come in from the wireless and fluorescent lights, those are just some of many symptoms I get from them. I see the sensory sensitivities listed as PANDAS symptoms, and have heard some parents say these symptoms do resolve after treating PANDAS, so I am hoping that will be the case for me also. But, if it doesn't, chelation seems like an excellent choice. Really impressed with this guy, first visit was just a couple months ago, so going to give him a go for a little while before looking into a DAN doctor. Not sure how he'll feel about chelation while doing antibiotics, I have a feeling Dr. K. would suggest "no", Dr. K. very much likes the pure test of just the antibiotics, with nothing else messing it up.

 

I am an actuary, work for an insurance company. Some actuaries do go the consulting route, mostly as part of a consulting firm, but some go it alone. Becoming an entrepreneuer would be a big shift for me personality-wise, but, I think the more pertinent point is that this role involves lots and lots of travel and visiting the clients and potential clients, and would actually be much worse in terms of these sensitivities. Thanks for your thoughts and suggestions, it does really seem like a tough one, but probably easiest to get some accomodations from a company I've worked at for 10 years, where they value me a good bit. (And a real cure would be nice, too, of course!)

 

Michael

[faith]

Michael,

so are you saying that you showed antibody to mycoplasma p.? And basically if you treat with abx for a time, it should clear and your symptoms too? Is Biaxin the abx for mycoplasma?

 

I'm not clear on the chelation part, did I miss something?

 

 

Faith

[MichaelTampa]

Faith,

 

Yes, I did show somewhat high antibodies to mycoplasma pneumoniae. That, along with certain symptoms (he mentioned rage), made him believe my issue is myco-p rather than strep. Yes, he chose biaxin as the first antibiotic to try because he believes it is particularly good in getting rid of the myco-p, and yes, he believes find the right antibiotic, take it for a month, and I'm all fixed up and that's that. That sure would be something, huh? But, if the biaxin doesn't work right, he does recommend a steroid burst next to show that we are still going down the right road.

 

On the chelation, I was just talking about the local doctor generally and the tools he has. Some of the natural MD's use chelation to get rid of the heavy metals. Some people think the sensitivity to fluorescent lights and EMF's generally is a sign of heavy metal poisoning. I did react with spasms to a drug with aluminum and, while my mercury levels look really low (I had worked on that), the aluminum levels look somewhat average to above average (60th percentile I think). The idea of chelation has been on my mind for years and I did try to get it a couple years ago, but the doctor I approached felt the test results showed I didn't need it. At this time, we'll probably just try the Dr.K. route here, but still keeping it in mind.

 

Michael

[Fixit]

Hi Micheal,

 

Dr K wants to do a phone consult with us. I believe you are in FL. Did you have to see dr k or was all this done over the phone? was he able to order tests for you first, if you did have to go there? and what about the abx's....i'm hopeing you were able to do this all long distance?

 

I emailed dr k before christmas, i am just trying to spread out the $$$$$.....Was any of this covered by insurance for you?

[MichaelTampa]

Fixit,

 

I e-mailed him a history. He said he's happy to be a phone consultant with a local doctor of my own to do the prescribing, and he asked for certain tests to be done before the phone consult. That way, he knows what to recommend because he has the results he needs. So, my local MD prescribed blood tests. In my case, I was a new patient and he had plenty of other tests to do, and it all got done together. Then, Dr. K. recommends a treatment plan for me of biaxin, then maybe steroids, then maybe augmentin, but it is the local MD who will have to prescribe it. His general approach is like this, as you're not supposed to prescribe drugs from patients in a different state who you haven't met. All this works well if you have a local doctor who's willing to go along, so I haven't met Dr. K. at all. I've heard from someone else who did this that Dr. K. can communicate with that doctor if the local doctor has questions or whatever. I haven't yet given this treatment plan to my local doctor, but I'm sure he'll go along, as he has an aggressive style (meaning, let's go attack this problem) and these prescriptions aren't generally seen as that risky, certainly compared to a lot of other stuff out there.

 

They took my insurance information and certainly did not promise anything. At $350 for a one hour phone call, I imagine a small amount will be covered. But this just happened, so I don't have a statement on that yet.

 

Michael