14 year old with severe lightheadedness (has 5 positive infections)

Hi Everyone ,
I would like your help/advice please.
I added my post over a week ago onto an existing post - Bloods taken, what now I think was the name of that post. Anway, thanks so much for the replies there. However, I cant find that old post now so I would like to start a new post. Hope thats ok. My daughter is still waiting to see a doctor here in Ireland.

My 14 year old daughter has been sick since last November and was diagnosed with POTS last June. She was on middodrine but it didn’t work in clearing her light-headedness. Her light-headedness has gotten worse along with other symptoms. I decided to get her bloods checked with Armin Labs in Germany as she now has chronic light-headedness and these other following symptoms:-

• chronic light-headedness, eases a bit on lying down, but is debilitating, my daughter in bed all the time;
• headaches coming wax and wane but are terrible while they are there
• chronic fatigue
• could sleep during the day and her body clock is all over the place
• stiff neck and sore to touch near neck on right hand side;
• there are increased floaters in her line of vision.
• sensitivity to light
• sensitivity to sounds
• ringing in right ear in particular from time to time or both
• Tremors - unexplained shaking on the inside of the body
• developing poor sense of balance when she gets out of bed these days. needs to step sideways to stop herself from falling over.
• cant read, its too much for her eyes.
• flashes on lights appear on pages
• sees flashes of light at sides of eyes especially if room in darkness and needs a dim light on so this doesnt happen
• extreme fatigue
• feels like she is going out of her mind at times.
• has derealisation also


The test my daughter got carried out with Armin Labs Germany is the TickPlex Plus test. 5 infections came back positive.
Babesia microti IgM 1,036
Bartonella henselae IgM 1,096
Rickettsia akari IgM 1,409
Human Parvovirus B19 IgM 1,238
Mycopl.pneum.u.fermentans IgM 1,270
With the following note from lab person
Please look at the results of the EliSpots and the
CD57-positive NK-cells.
(I don’t know what the lab person is referring to here re Elispot and CD57 and NK cells as the Tickplex Plus test just looks at the following and thats all my daughter got done).

Tickplex Plus IgG/IgM tests for
• Borrelia burgdorferi
• Ehrlichia
• Bartonella
• Babesia
• Mycoplasma
• Rickettsia
• Epstein Barr Virus (EBV)
• Coxsackie-Virus
• Parvovirus

We are still waiting to see a doctor with experience with tick borne diseases.

My questions are:
has anyone on this forum had same/similar symptoms?
Which one of the infections could be causing the debilitating light-headedness?
I am worried about the babesia microti as it’s a parasite infection, I feel we could be waiting until after Christmas at this stage to see a doctor with specialty with tick borne problems. Does babesia spread rapidly in the body? I have read on the internet that it can be life threatening and am sick with worry.
Is there anything like natural remedies that could help in the interim to ease the light-headedness?
I am going out of my own mind with worry and waiting for the consultant to give us an appointment.

Any advice/help appreciated, thanks so much!
Blueberry

Post Edited (Blueberry) : 12/15/2019 7:31:00 AM (GMT-7)

POTS is very common with Lyme and co-infections, as are the other symptoms you mentioned. These infections are all treatable. It's a long, hard, road - I don't mean to sugarcoat anything here - but it's all treatable. Sounds like your child is going through an awful time, but I've been there, and many of us have been there, and these times do pass.

It's great that you are reaching out here; your child is fortunate to have you looking out for her! I know it must be so scary for you to watch her go through this, though. Feel free to start a new thread whenever you have a new topic to talk about - questions, venting, requests for support or advice, etc. You also might find it useful to use the search bar to see if there have been past discussions about things that interest you. POTS, for example, will yield a lot of results.

Your child is not alone in not being helped by POTS meds. Some studies say they work no better than placebos, but some people I know personally swear by them, so it was worth a try. For me, ingesting lots of non-iodized salt has made a big difference, and in especially bad times I find compression stockings helpful. POTS is a neurological illness, not cardiac, but it helps to keep blood volume high, so if she menstruates heavily, then make sure she has the nutrients to make more blood (iron, vitamin C, B12). (Babesia can cause anemia, too.) When my other symptoms flare, though, POTS still tends to flare somewhat. I have a blood pressure cuff and a pulse oximeter that come in handy for monitoring my symptoms, using biofeedback to self-regulate to some degree, and keeping myself safe. Remind her that there's no shame in using a wheelchair when she needs it.

My adrenal system goes easily out-of-whack due to these infections and (in my case) causes a lot of the symptoms you mentioned. Adaptogenic herbs (ashwagandha, eleuthero, holy basil, licorice, rhodiola, etc.) can help a lot, but they affect everyone differently, so make sure to try them at a very low dose (like one drop) to start.

Unfortunately Lyme-literate doctors often do have long waiting periods before appointments. Another few weeks is unlikely to make a difference in how treatable the infections are because it looks like she was infected a year ago or more. I definitely understand how hard it is to wait, though! Please feel free to lean on us in the mean time!