I suffer from possible lyme disease for many years, got treated a long time, but am still sick and sometimes - if i look at my reaction to certain abx - still have doubts if its really lyme.
now, after a throat infection, i suffer also from extreme fatigue (which comes and goes in flares), pain in chest, flu-symptoms, hot flashes, i hear my heart beat loud and have problems breathing.
which makes me look back at my lyme therapy (no co-infections testet pos.) and if reactions to certain meds could mean something (do i have lyme or what else?).
- i always got extremely worse on tetracyclines like doxy and mino (lot more neuro pain, new symptoms). i doubt that it were herxes cos i never got better on them. not even after 6 or 9 months. isnt it untypical for lyme?
- i got extremely worse on flagyl/tini, lots of new symptoms (like disorientation and tiredness) that never went away afterwards. because of that i doubt it were herxes. isnt that also untypical for lyme?
- i felt great on rocephin - but only as long as i was on it. i know this is typical for lyme, but it could also be another bug or just a pos. side effect?
- i didnt feel much difference on oral cephalosporines.
- i didnt feel much difference on diflucan.
- i didnt feel much difference on macrolides. except when i was on tini plus macrolide: got lots of new symptoms that never went away afterwards. because of that i doubt it were herxes. isnt that also untypical for lyme?
what could cause my fatigue when there is no co-infection?
any ideas?
[ 04-23-2011, 03:33 AM: Message edited by: sickmate ]
Posted by tick battler (Member # 21113) on :
It is almost impossible to have chronic lyme and not have any coinfections. Dr. Burrescano states this in his guidelines. As with lyme testing, the coinfection testing is extremely unreliable.
The fact that you had improvement on Rocephin shows you have lyme but the reason you are not feeling better is because you are not treating coinfections! That can make all of the difference.
I would recommend finding a new LLMD. We had to go to several before we found one that adequately addressed coinfections. Our entire family of five had babesia, bartonella, ehrlichia, parasites and viruses along with lyme.
An even better option is to find a lyme literate practitioner who does muscle testing or electrodermal screening so you can get a better idea of which infections are there.
tickbattler
Posted by Shahbah (Member # 28735) on :
well first of all, when did your "chronic fatigue" start, since when have you been sick? Then for how long did you treat? Hpw was your detox?
Posted by sickmate (Member # 31502) on :
i got sick a decade ago, started treating lyme after a year, got chronic fatigue last winter with a throat infection.
concerning co-inections i want to add that i also tried malarone and artemisinin (also got worse). wouldnt most of the abx i took also kill co-infections? why do i only get worse on most of the abx without getting better?
Posted by Shahbah (Member # 28735) on :
how is your stomach? Any issues with that? abx are hard on the tummy...
Posted by tick battler (Member # 21113) on :
onbam - how can lyme be shown to be chronic on its own when we can't detect the coinfections with testing? How do we know coinfections are not there?!
Dr. B says that he found that his patients with chronic lyme "universally" had coinfections. He has studied this illness for 25 years, so I tend to agree with him on most things.
Further, he says that when you present with mostly or exclusively neuro symptoms, you most likely have bartonella causing these symptoms.
How many on this forum have you met that only treated lyme and recovered? I know it's possible, but in my view, very unlikely.
tickbattler
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sickmate:
concerning co-inections i want to add that i also tried malarone and artemisinin (also got worse). wouldnt most of the abx i took also kill co-infections?
-No. You need specific meds for each. There is SOME overlap. I would highly suspect babesia since it is known to cause extreme fatigue. In my opinion, very few chronic patients have Lyme only.
You say you "got worse" .. but how long were you on malarone/art (for example)?
It can take months and months to get over babesia. (or lyme, bart) I herxed for well over a year on meds. Only felt worse.
Posted by tick battler (Member # 21113) on :
I agree with lymetoo...that babesia is likely there too. Extreme fatigue, chest pain and hot flashes are all common babesia symptoms.
Another thing that I think Dr. B said was that if you don't get better after a significant amount of treatment, than you should look to babesia as a possible cause. If there is an underlying babesia infection, no amount of lyme treatment will make you feel better.
tickbattler
Posted by sickmate (Member # 31502) on :
yes, co-infection testing might be not reliable, but i had never ANY sign of a co-infection, no ehrlichia, babesia, bartonella, rickettsia - NO igg, NO igm, NO pos. pcr. babesia pcr: neg.!
even with lyme tests that are unreliable you have at least at some point a slightly posit. westernblot, at least igg, but i always had nothing with co-infections, only lyme.
(one exception: got tested slighty pos. for chlamydia once, but only once and tetracyclines and macrolides treat chlamydia and i didnt get better on them)
stomach is okay, bowel sometimes feels like a bit of inflammation.
i was on malarone/art for a month, when i also only got worse and worse. i know, now you say its too short, but if take expensive meds with strong side effects then they have to make you feel better.
lymetoo, you say you herxed for over a year on meds and only felt worse. And then you finally got better?
am i the only one who deteriorated badly on flagyl and never recovered? can flagyl cause any infection (except yeast)?
Posted by glm1111 (Member # 16556) on :
Look into treating for parasites which can cause very similar symptoms to Lyme disease including chronic fatigue.
Do a search on here by typing parasites into search bar. Don't ignore this, it could be an answer for you.
Gael
Posted by tick battler (Member # 21113) on :
You have CLINICAL signs of coinfections. My children did not get a positive babesia test until 6 months into babesia treatment!! We started treating it based on clinical symptoms.
Parasites are probably also an issue as Gael says. Once you get lyme, everything else joins in.
tickbattler
Posted by beths (Member # 18864) on :
If you were on malarone/art and got worse and worse...sounds like you may have babesia-esp with the fatigue, and breathing issues.
The first few months of malarone can be pretty rough.
Find a new LLMD. Doxy can also weakly hit babs-seems like when you were on meds which might of hit babs, you got worse.
Pt's who don't get better with lyme treatment are usually co-infected
Posted by sickmate (Member # 31502) on :
Thank you for your ideas.
I know my symptoms are similar to those of babesia. but in europe (where i live) human babesia is absolutely rare, it nearly does not exist. we do have bartonella, mycoplasma and rickettsia though.
and my stool was tested twice for parasites: nothing. my infectious disease doc also says my eosinophils wouldnt be normal if i had parasites.
Posted by glm1111 (Member # 16556) on :
sickmate,
The tests for parasites are not very accurate. I tested negative over the years and I was loaded. Most doctors are not knowledgeable about parasites.
Gael
Posted by tick battler (Member # 21113) on :
Yeah, a lot of docs have never even heard of babesia here in the USA, and if they have, they think it is rare. Now, all of a sudden, to the surprise of those who don't believe in chronic lyme, it is a "reportable disease" to the CDC because there are so many new cases.
I highly doubt babesiosis is rare in Europe. The docs may tell you that but I don't buy it.
Anyone else from Europe who can comment on this?
I really think you should consider getting a new LLMD. Why don't you post a question to those in Europe asking if anyone has babesia?
And I agree with Gael...parasite testing is highly inaccurate.
tickbattler
Posted by Rumigirl (Member # 15091) on :
Dr. K, who is from Germany, says that it is thought that Babesia developed in Germany. People there were/are loaded with it. To say that it hardly exists in Europe only says that the drs there don't know about it.
Your symptoms certainly sound like Babesia.
Yes, you need the best LLMD you can find. Many people in Europe come to the US to see Lyme drs for that reason. I don't know where you are in Europe, or whether their is someone good closer to you. Find out. Don't just let your suffering go on, due to the ignorance of drs where you are.
Posted by momlyme (Member # 27775) on :
I put [babesia europe] into Google and the #1 link said
quote: Babesiosis is an intraerythrocytic parasitic infection caused by protozoa of the genus Babesia and transmitted through the bite of the Ixodes tick, the same vector responsible for transmission of Lyme disease. While most cases are tick-borne, transfusion and transplacental transmission have been reported. In the United States, babesiosis is usually an asymptomatic infection in healthy individuals. Several groups of patients become symptomatic, and, within these subpopulations, significant morbidity and mortality occur. The disease most severely affects patients who are elderly, immunocompromised, or asplenic. Among those symptomatically infected, the mortality rate is 10% in the United States and 50% in Europe.
You said, "tried malarone and artemisinin (also got worse)."
If you got worse on artemisinin - it means you have something in you. Some sort of parasite. Whether that be babesia or one of the many, many other BAD parasites that live inside of us... is yet to be seen.
I say go back to the artemesinin. See what happens.
Posted by Haley (Member # 22008) on :
You should be tested for Strep in the blood. My doctor tested me for Strep along with all my other infections. I can tell when my Strep flares, I have extreme fatigue. I don't get as much fatigue from the other infections.
Also Rocephin would treat Strep, could be why you felt better on Rocephin.
It's worth looking into.
Posted by seekhelp (Member # 15067) on :
You could feel terrible on Art due to a PA-450 pathway issue and not killing things. It's a little presumptious to automatically believe it, but it may be true.
Posted by sickmate (Member # 31502) on :
I know also one very reputable llmd in europe who says babesia is rare over here.
I also thought about going back to artemesinin just as a try. but on the other hand my fatigue could come from so many infectious diseaes. i have to find out first. and i cant stand always getting worse and worse. medicine has to help you, not make you sicker longterm. what elso does arte fight by the way?
Haley, i got tested for strep in blood and mouth. both negative. so this is not my problem.
Gael, how did you find out you were loaded with parasites? Shouldnt you see parasites in your stool? Wouldnt flagyl have helped me if i had parasites?
Tick battler, is your family better now?
Are there others here who always get worse on tetras or flagyl?
Posted by ticksickfamily (Member # 22786) on :
I am in the UK and I know several Lymies here who have Babesia too. There is Babesia in cattle here called red water fever which is recognised by vets but not in humans by doctors,which is very strange.
Just because very few cases are reported does not mean it does not exist. I think it means that Doctors do not recognise it or are uninformed about Babesia. Testing for Babesia is almost unheard of in the UK, I know because I have been trying to get some done for myself. The species of babesia in Europe are usually babesia divergens or EU-1
Posted by ticksickfamily (Member # 22786) on :
Also just found this pubmed reference to Babesia in Poland
However, there are other, more virulent strains of Babesia that are NOT rare in Europe, and carry much higher mortality rates than B. microti.
I wouldn't discount the possibility of co-infections.
Testing for ANY infectious disease is ridiculously unreliable and there ARE such things as "seronegative" infections. This is why these infections are diagnosed clinically, based on symptoms, and given an antibiotic challenge.
If antibiotics had an affect on you, then there's an infection present. Be patient with the treatment and not so quick to give up after just a day or so. Switching from antibiotic to antibiotic and cutting treatments short only causes MORE resistance amongst the bacteria.
Posted by nefferdun (Member # 20157) on :
Sounds like classic babesia. Even the sore throat is a symptom of it. Do you lose your voice and sound hoarse? You need anti-malarial meds. Antibiotics won't address babesia.
You probably still have borellia as well. When you took abx you suppressed the Bb but then the babesia came out and took over. Very common.
