Could this be lymes disease and/or co-infections?

Hello,

I am new to understanding lymes disease. I have poured through many posts, websites and articles over the past week trying to see if this might be causing my son's problems.

On January 2018 we moved from VA to CO. It was a stressful move for my son. He started his new school mid-year and was anxious to do well and meet new friends. Shortly after we moved he started complaining about stomach aches. This wasn't characteristic of him but I figured it was nerves related and tried to keep his diet healthy, and gave him vitamin supplements etc.. Several weeks later he started complaining about feeling dizzy when he got out of bed on occasion and sometimes when he was sitting on the couch for long periods of time and then stood up. He mentioned this very infrequently maybe one time every other week. He seemed very normal in all other aspects, playing sports, socializing etc. about mid May he started complaining several times a week about the dizzy spells and some shortness of breath. At that point we started going to a Functional Medicine Doctor to help us determine the cause of these issues. After the doctor's first examination, he believed my son was suffering from POTS. (Othrostatic hypotension, Tachycardia..etc). His blood pressure would drop every time when standing but remained normal when sitting or lying down. A battery of blood work was also done to rule out other conditions, diabeties, autoimmune issues etc... We tried natural approaches to raise his blood pressure, salt intake, increase adrenal response using supplements , and all kinds of vitamins. Nothing worked.

Two weeks ago, the doctor had us run more blood tests, his white blood cell count was indicating he was fighting something. These were more in-depth tests to look at Lymes and co-infections. We are waiting on these results.


Here are my thoughts:

We lived in VA for 15 years and backed up to woods and had loads of deer running though our yard.
He certainly had tick bites but never had a bulls-eye rash or any flu like symptoms that I can recall.
We moved and he had a very Stressful experience.
Stress could have made the lyme virus go from dormant to active.

symptoms: started with stomach aches, then dizziness and blood pressure changes, also complained periodically about his knee joints bothering him and lately he said the upper back between his shoulder blades was achy. The joint/back pain would come and go but he is consistently having blood pressure drops.
His activity has dropped significantly and is not able to play sports this season due to fatigue when exerting himself.
A side note: His grandmother just got diagnosed with lymes and she used to live close to us.


Sorry for the long post, but I wanted to be thorough. Any thoughts would be appreciated. Thanks.

Bumping for more views

Certainly sounds like there is a good chance it could be a tick borne infection. I agree with all of goshawk's comments.

I think it is important to repeat that testing cannot be relied upon solely. Testing isn't even close to sensitive enough. My testing was reported back as negative, but there were 4 positive bands and 1 IND. CDC surveillance/epidemiology criteria requires 5 bands to be counted as positive in national case counts. I guess I was 90% positive, but I get counted as a negative LOL....

Anyways, my point is that when the testing comes back, ask for a copy, or get the results somehow. Offer to go pick up a copy if necessary.

It would be smart to start looking for an LLMD now

cm3boys said...
I really appreciate this great advice. Its clear these responses are from people with good knowledge. Its interesting you would ask about Mold issues. I didn't mention that in my original thread, but this was a topic I discussed with my integrated doctor as another possibility.

Here is a little more background.

We moved to CO in January and lived in a rental home from Jan-May.
We had to move into another rental home (because our house didn't sell in Va) in early June until present.
We went back to VA for a month this summer to sell the house.

My son's condition never changed from one environment to the next.

Would mold symptoms improve if you are away from the source for a month?
There was no change in symptoms from one rental house to the next? I guess the good thing is if this house does have mold we can obviously move again.

I've been looking for possible water damage in the drywall or mold in ducts etc... at this current house but nothing looks suspicious; however, I am no expert.

Is there an inexpensive kit to buy that could give us some possible indication of mold issues?

Also, I realize that the blood work is not fully conclusive. Thats why I want to make sure I find a doctor that is well studied and has had many patients under his/her belt. My integrated doctor has already told me they would have to refer us to a lyme specialist if the blood work came back suspicious.

The blood work I am waiting for is from Cyrex labs. I believe they would do some followup blood work from IGeneX if lyme seemed probable. They are still casting the net and haven't focused on Lyme only.

I will have a followup with the doctor soon. Can you give me some questions to ask and maybe specific labs that would help narrow down these mold/lyme possibilities?

Also, in regards to the LLMD, I looked at a few websites for doctors that treat lymes, but I didn't get a good feeling they were primarily focused on that illness. Any advice for LLMDs or mold specialists in the greater Denver, CO area?

Welcome to our community.
Just doing a quick post:

Yes, symptoms can improve some if you leave a moldy environment. But, he will most likely need to detox/treat the mold in his system even if he changes locations to a non-moldy home.
It can also take awhile...if it's just been since June...probably not enough time.

Yes there are some good test kits for mold...but I'll let the members who have done the mold testing answer that, give you information.

To find a LLMD, start a new thread: "Looking for LLMD in/near Denver, CO" Then enable your email option so members can send you names. We don't post the names here for privacy/protection of our Docs.

Do you have a Dr. who would be willing to sign a lab requisition?

You can call Igenex Lab and they'll send you a test kit. The best bang for your buck is the Lyme WB IgM and IgG for a total of $250.

You get the lab req signed....go to a lab for blood draw...and then Fedex the kit back to Igenex.
Approx. 3 weeks later your Dr. gets the results...and they will also send you a copy...but I think you need to ask them for that specifically.

cm3boys said...
They would run the ImmunoBlot IgM and IgG but my pricing said its $225 per test. They are good with getting me any blood work requisition I want. I'm used to taking these kits to special blood draw places and having them mail it out. Thanks.

So if you get a positive borrella burgdorferi (lyme virus) and Streptococcal M protein (which shows the virus could be hiding) then have the IgM and IgG test run plus displaying suspicious symptoms, would that be the best approach to determining you should treat lymes?
thanks

so that's the Igenex ImmunoBlot?

You can do the WB instead...it's still the test that many (most?) people do with Igenex.

Well I certainly don't want to pay $500 if its not necessary, but do want a little more reassurance we are going down the right path. Also, can't rule out a mold exposure at this point. Just out of curiosity, if we get positive results with all these tests, does that mean a positive is a true positive? I know you can get false negatives. Sorry, I'm still trying to figure this all out.
thanks.

New Update on my Son's condition. Went to see the doctor yesterday to go over his most recent blood work. Doctor ran a Cyrex blood panel Array 12 Pathogen-associated immune reactivity screen. One test came back out of range. "Aspergillus" at 1.35 range. The reference range is 0.2-1.8. I understand this is a fungus that can often take up residence in the lungs and can become a big problem if not treated. Borrelia burgdorferi came back normal, but we aren't ruling out lymes at this point because it was such a high level test. Doctor said we need to investigate the Apergillus further. Wants to do more blood tests on Apergillus and a cA4 panel to check out CIRS. This is through labcorp. Next he wants me to order a mold test kit "ERMI test" to see if anything is in my house. (Although this is not the house we lived in when we started having symptoms). Also wants me to get a CT scan of his lungs. I hate to do CT's unless absolutely necessary due to the amount of radiation they produce. I'm really on the fence with that test. Anyway, I know these questions are moving into the mold/fungal area but was hoping someone had some experience to give me advice, whether this is a good next approach or other options. I appreciate any help.

Not sure if the MRI gives enough clarity in the scan to see the fungus. I forgot to mention the doctor also wants a nasal swab to rule out MarCons. My initial thought is to do all these diagnostic blood tests, nasal swabs and test the house. Get some more clarity on the issues then do the CT scan if necessary. I mentioned that the aspergillum was out of range. Technically it is in range but just on the higher side. His main issue seems to be more low blood pressure, shortness of breath when standing. His not coughing or wheezing etc...