Absolutely lost with all of this. Any advice is much appreciated

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Jul 2016
Total Posts : 144
   Posted 10/27/2016 3:45 AM (GMT -6)   
Diagnosed with CFS in April 2016. Gone from being very fit 35 year old who cycles loads, few marathons etc to now struggling to work longer than 3 hours a day. The fatigue is indescribable as you all know.

Since my diagnoses ive researched and researched as much as I can, ive spent so much money on tests and im still is the same position. I tested for Lyme with Germany company which came back IGM positive but my last known tick bite was july 2015 which means its maybe a false positive. I tested positive for EBV IGM, Coxsackie and mycoplasma also all done through german lab. NHS not interested at all and ive been left to it. Now struggling to work, do much with my son im completely lost. I still dont know if I have lyme, I have no idea if its viruses causing all this. I spoke with another german company who said they would treat my lyme and coinfections with antibiotics but im worried I shouldnt be taking them if i dont actually have lyme.

Any advice? Havent got a clue what to do and ive lost my job so funds are now very limited :)

Veteran Member

Date Joined Nov 2015
Total Posts : 551
   Posted 10/27/2016 3:50 PM (GMT -6)   
Sorry to hear you aren't finding answers to your ever increasing fatigue. I can only speak from the Lyme perspective as our son has extreme chronic fatigue as one of his worst symptoms with Lyme and other tick infections (mycoplasma, babesia and bartonella).

If you do take antibiotics targeted toward Lyme you will probably figure out if it is the cause pretty quickly, because many who are become either suddenly well (sometimes for just a few days before they get worse unless the bite is very recent and yours isn't) or they feel even worse, depending on how long they've had it. This is because of the sudden die-off which causes the Herxheimer effect plus new symptoms can arise. Our son became incredibly ill while on the first month of antibiotics. It really helped confirm some of what we were going to be dealing with. He, however, had a very positive Lyme test but had Lyme etc for several years before testing and thus had many co-infections that had progressed. Not everyone - yourself included gets a + test - but that doesn't mean you don't have it.

Hope this helps a bit and good luck with whatever you decide to do.
Parent of 14yo DS with +Lyme test in Nov 2015, co-infections: mycoplasma (strongly +), babesia, mainly with antibiotics/anti-malerials. Supplementing with Vit D, Vit C, Vit B-12, multvitamin, milk thistle, dandelion, nettles, Burbur/Pinella, L acetyl carnitine. Magnesium oil, charcoal led to shorter herxes.

Website I started: ParentsofLymeKids.com

New Member

Date Joined Aug 2016
Total Posts : 15
   Posted 11/6/2016 7:48 AM (GMT -6)   
try to read some more about atrial fibrillation problem. You are relatively young with 35, but AF makes today problems to teenagers also. Your being a cyclist makes you a very good candidate for AF, and the symptoms are fatigue, shortness of breath etc. AF is something that comes and goes, so it is not easy to be caught in the early stage. Erratic pulse is a certain sign that you are in AF. Wish you to be well!
P. M.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 12:08 AM
There are a total of 3,004,518 posts in 329,151 threads.
View Active Threads

Who's Online
This forum has 161743 registered members. Please welcome our newest member, worldmicroblade.
262 Guest(s), 2 Registered Member(s) are currently online.  Details
RunJerRun, noodlesnoodles