Could I have Lyme still or CFS started by Lyme?

[ChiliPep]

So my CFS started around 1997. I was in denial for so many years blaming myself for being lazy that I don't really know how it started. One thing that did happen In 1997--I was in Northern Minnesota and Wisconsin for a couple weeks in the deep woods hiking and got a big bullseye rash on my arm. I had heard of Lyme Disease so as soon as I got back to Arizona I went to see my doctor (saw the PA) and she told me she could either test me for Lyme Disease but it takes days or weeks to get results or she could put me on antibiotics right away but then I would not know if I had Lyme because the tests would be false negative after I take the antibiotic (which doesn't make sense now but that is what she told me--maybe it was an insurance thing?). So I chose to go on the antibiotics right away and not get tested. They did take a scrapping of the rash to test for other possibilities like ring worm but they came back negative.

I didn't really think about it again for about ten years when I finally started realizing my fatigue was not laziness and started seeing specialists and doing research. Every search for my symptoms would come up with Lyme disease amongst others and I read about Chronic Lyme Disease. I went to a rheumatologist and he dismissed my Lyme concern saying that Lyme wasn't in the areas of Minnesota or Wisconsin that I had been in. He did a Western Blot test anyway and it was negative. Years later I was on the CDC site and saw a link for a Lyme Disease map and the area of Minnesota and Wisconsin I was in came up almost solid red with dots of outbreak areas which made the hairs on my arms stand up, so I went back to the rheum doc and he did another Western Blot and again it was negative. He told me the Western Blot is extremely accurate.

Do you think I should give up on the Lyme angle of my CFS? I do get fevers easily and during my last two surgeries I had fevers of 102 and 103 and they could not find a reason. Do you know if that is a Lyme thing, weird fevers when the body is stressed? Normally my temperature runs low. The weird thing is that I was telling my medical oncologist (just had cancer) about my symptoms so she'd know I wasn't a healthy patient she was putting on chemo, and out of the blue she said "It sounds like Lyme Disease". Not something you hear from doctor's in Arizona so it got me thinking again about Lyme.

After a surgery in December, I had a fever of 102 so they put me on strong antibiotics and then I caught c.diff from the hospital, ended up with blood sepsis, spent a week in the hospital. Was very ill for 2 1/2 months, so experimenting on antibiotics is not something I want to do without real reason but then again I am desperate to cure my CFS.

 

[Starlight]

I wish I could say something that would be helpful to you but I hope others will do so.you have been through so much. I was diagnosed with me.cfs 12 years and then I had tests with Armin labs in Germany about 18 months ago.i was positive for lyme and confections. I then began antibiotics and after 16 months on them I have some improvements but I still have very severe fatigue and symptoms which totally limit my ability to go out at all or even to do but very little at home.I'm not sure what to do at this stage.. There is a thread on lyme disease on Phoenix and I imagine many are in the same situation as you . I hope you find answers and better health.

 

[pcmenten]

I can tell you that in the past, when I would take certain antibiotics, I would suddenly feel better. Unfortunately, courses of anitbiotics usually don't last more than a week, so the effect would wear off. Recently, I was trying out an idea and started taking an antibiotic called Doxycycline, and again, immediately started feeling better. I brought this to the attention of my care provider and requested testing for Lyme. I tested positive.

What I'm trying to point out is that taking certain antibiotics can be diagnostic. If you suddenly start to feel better, you should investigate. None of my doctors were at all interested in hearing what I had observed, so you'll have to do your own work to get answers.

Do you know what antibiotics you were taking in December? An antibiotic called Clindamycin, which is an anaerobic antibiotic, can cause a flare-up of C. difficile. You can find a yeast called Saccharomyces Boulardi that will calm your large intestine. Other probiotics are not going to be helpful while you're on antibiotics.

 

[helperofearth123]

It could be post-lyme disease syndrome, which is just another type of CFS. It's what I have, unless I am still infected with chronic lyme which remains a small possibility. The infection can be completely gone but it can trigger an immune system problem i.e. ME/CFS.

So there is no current way to know whether the infection is still active or not. I tried taking 6 months of oral doxycycline in case it was chronic lyme, but I felt no improvement. I tried the herbal lyme treatment too and felt nothing. So I've personally given up on lyme treatment and think it is probably what the professor of infectious diseases diagnosed me as, which is post-lyme disease syndrome or CFS.

But I did improve massively after IV antibiotics for a burst appendix. So that still makes me think it could be lyme after all. I don't know. Sorry there are no definite answers and all treatments has its drawbacks. Maybe try other types of lyme testing like spinal fluid testing? I've not had that done.

 

[ChiliPep]

That's interesting. I've noticed over the years that I always get relief from my autoimmune diseases and allergies when I'm in the hospital for something big like when I have surgery or once I had a perforated Meckel's diverticulum (which is like a burst appendix but not the appendix) and although I was horribly ill, all my other issues cleared up. I have a theory that it's because my immune system is busy with a real problem for once and isn't busy attacking enemies that aren't enemies like my thyroid gland, pollen, dander, dust mites... But after reading your post, maybe I felt better because I have Lyme and it's the antibiotics clearing up the Lyme. But it also got better after my c-sections, and I don't think they put me on antibiotics then. Maybe your relief after your appendicitis was that CFS might be autoimmune and your immune system was busy fighting the burst appendix instead of whatever it does to cause CFS. Just a thought. It also might be that the IV antibiotics they gave you were much stronger then doxycycline and even though doxy is the preferred antibiotic for Lyme, maybe you needed a massive dose of antibiotics to clear the Lyme for a bit. Interesting to think about. I'm going to check out what the herbal Lyme treatment is just to see. Thanks!

 

[Rossy191276]

It could be post-lyme disease syndrome, which is just another type of CFS. It's what I have, unless I am still infected with chronic lyme which remains a small possibility. The infection can be completely gone but it can trigger an immune system problem i.e. ME/CFS.

So there is no current way to know whether the infection is still active or not. I tried taking 6 months of oral doxycycline in case it was chronic lyme, but I felt no improvement. I tried the herbal lyme treatment too and felt nothing. So I've personally given up on lyme treatment and think it is probably what the professor of infectious diseases diagnosed me as, which is post-lyme disease syndrome or CFS.

But I did improve massively after IV antibiotics for a burst appendix. So that still makes me think it could be lyme after all. I don't know. Sorry there are no definite answers and all treatments has its drawbacks. Maybe try other types of lyme testing like spinal fluid testing? I've not had that done.

I'm in exactly the same position Matthew.... I tend to think that Lyme triggered ME for me as I have positive tests but symptoms are severe ME...