After 6 wks of doxy some relief with some nice up days, but some pretty horrendous crashes.

Went to llmd, started talking about the possibility of bartonella after the information I found doing a search HERE, she prescribed rifampin. 5 days later I found a self that I haven't known in a few years.

Lyme now for at least 8 yrs, the bart for at least 2 (that is when I got bad vasculitis in my leg).

If I had continued going to the original doc (that worked at a supposed center for tick disease) I know there is no way this would have been found. He was rude, told me he was the one with the training, and intimated that llmds were unethical ('high dosage and mixed antibiotics are just something I won't do--I believe it's unethical').

THANKS for everyone who continues to share their time with others. I know I'm just having one good day, but I'm very grateful for this one.

Check for co-infections newbies!

------------------
Pasqualina

I was tested for erlichiosis which came back negative and am waiting for my bart results but I am just about dead certain now. One of the other members told me that bart was particularly bad with lyme b/c it causes neural symptoms nearly immediately.

In some perverse way I am thankful for the bart b/c my body had felt weak/fatigued, but outside of nagging depression (which I had since accutane--whole other kettle of fish), my cognition was ok. The last 2 years I went downright schizo and probably would have kept grinding on if the neural end hadn't gotten so bad.

Pas- you CAN show negative for coinfections but still have them. ALot of LLMD's including mine, Dr. C in missouri, know that as well as

borrelia ( which is hard to culture, and gives false negatives all the time) that so does co infections. I highly believe that co infections are actually HARDER to culture than borrelia,.

What some LLMDs are doing is giving a trial run of antibitics that are used for coinfections. If ya herx, or improve, ya got the coinfection.

I tested negative for bartonella and babesia and I have both! I herxed to heaven and back on clindamycin/quinine for babesia and some resistant symptoms that woudl NOT go away went away on that treatment.

Then, after a bit of a backslide, my LLMD moved me to Rifampin and I about freaked. Its commonly used for bartonella, but all the clinical signs yelled "hello, bartonella here" at my doc.

I had a very very hard time with rifampin, but when I came out of it, I felt better than I did going into it.

So yes, its very important that you not only be checked for coinfections, but IGNORE the negatives if all the signs put to go

yet nothing comes up positive.

I see this also, not just in newbies, but in some long term posters here, and eventually, people that return- they have a coinfection that went undetected.

So, if youre jamming down abx and doing everything in your power and STILL not coming along well,

consider a coinfection. IT doesnt hurt at all to run a trial of co infection specific meds to see what happens while on them. Herx? You go the coinfection. Feel better? Bingo.

Glad you and your LLMD caught the bartonella, and as stated, no - no doctor will help ya out with lyme.

Youre cured in ten days, maybe thirty and all is good and then there was light.

Hehe. Im glad you are on the right track now.

Good luck all and HAVE YOU CHECKED YOUR COINFECTIONS TODAY?

Here are quotes from other members posts that I found searching (kind of long):

Bartonella

From Maureen:

"Bartonella is an intracellular organism. Usually in chronic cases, a
cephalopsporin alone is not adequate. The only antibiotic which
completely eradicates it in cell cultures is aminoglycosides, apart
from that, the doxy and rifampin combo is best. rifampin is used for
9 mos. in TB so side effects have been examined in 1000s of patients."

Also saw mention of cipro + biaxin, zithromax + levaquin being used in treatment

Ehrlichiosis

From Sammi:

Ehrlichiosis is an infection caused by a rickettsiae that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea. Ehrlichiosis best responds to treatment with Doxycycline.

Babesia

From Marnie:

Human infections with Babesia species, in particular Babesia microti, are tick-borne illnesses that are being recognised with increased frequency. Coinfection with ehrlichiosis and Lyme disease is also being recognised as an important feature of these tick-borne illnesses. Despite the superficial resemblance of Babesia to malaria, these piroplasms do not respond to chloroquine or other similar drugs. However, the treatment of babesiosis using a clindamycin-quinine combination has been successful. Data in animal models and case-reports in humans have suggested that an atovaquone-azithromycin combination is also effective. This was confirmed in a recent prospective, open, randomised trial of clindamycin-quinine versus azithromycin-atovaquone.

Also saw mention of mepron + zithromax being used in treatment.

I am very happy with my llmd but I don't think she would have tested for the bart if I hadn't found the info here, at least not initially. This isn't a knock on her in the least--what I begin to realize is that so many folks go in with 50 different sx and typically what comes out first is whatever is bothering them that day, which may or may not sound like a co-infection.

What I swore I would do but didn't was keep a log and try to keep a checklist/synopsis of sx to present to the doc to make their life and my dx easier. That being said, I became distracted and probably went off and broke something.

I don't know if you already have Dr. B's guidelines but if you don't please print these out if you are going to be giving docs to your doc:
http://www.lymenet.org/DrB-GuidelinesNov2002.doc

Did you experience nausea, vomiting, sweating and diarrhea?

I don't have any of those. I seem to only have the typical Lyme symptoms.

Is that a good indicator that I'm NOT coinfected?

The answer is no. Lack of those symptoms does not mean you are not co infected.

ALOT of the babesia and bartonella co infections ( at least for me ) overrode the lyme symptoms. I always kind of knew I had babesia

because of the electric shooters in my foot and thank god, I responded nicely to abx treatment for it with a LLMD who knew what he was doing.

When I started to backslide however, my symptoms were the same as in the beginning and I was terrified: swollen lymph nodes and the entire side of my neck swelled

stiff neck, severe migraines, and sleep apnea as well as this dry cough. Those are all lyme symptoms, but when I told my LLMD

this , he immediately picked out bartonella and he was more than right.

The way that he kinda explained it was if you're being treated for lyme, and your co infections are covered, but you are

still going downhill- suspect ANOTHER coinfection and for me, all that was left was bartonella

and I tested negative numerous times, but the medication for it? Oh lord... I herx.

So no, absense of symptoms doesnt really mean anything since alot of co infections mock lyme with symptoms. When my LLMD

called me in Rifampin, I lost it. I sat there thinking "what the hay is he doing". Well, when I spoke to him ( had I checked my fax machine, I would have seen he replied before calling me in Rifampin)

I would have seen his thinking was bartonella since pretty much all other bases were covered, PLUS add in that I was herxing, but still going backwards. Made no sense to me but he picked it out very well I might add.

If you havent been checked for coinfections yet, ask that you be and if you are not

coming along ( slowly but surely) ask for trial meds for either bart or babesia. Assuming erlichia is taken care of with doxy and has been taken care of already.

hope that helped.

I don't have the shooting pains, swollen lymph nodes, etc.

After being here for a month or so, I'd say my symptoms are fairly mild compared to most.

Then again, I'm fairly early in the disease compared to most (8 months).

I did one month of Doxy and I did improve. So much so that I had regained almost all of my strength and stamina.

But, I still had some headaches, fatigue and muscle aches.

A month or so after completing the Doxy, I began to get worse again.

I was sore and tired all the time, and the headaches resumed.

But those are pretty much the extent of symptoms.

Actually, since starting Effexor, my headaches are almost completely gone, my pain has been cut in half, and I only sleep 14 hours a day after I've done something really exhausting.

I'll be seeing an infectious disease guy in a few weeks, so I'll be sure to ask him about these tests.

Can co-infections be tested by a regular lab, or do I need to go through IGeneX?

Thanks!!!

It seems to me you have to treat your health like an onion--you peel it one layer at a time. As you treat, the relationship between your infection(s) and body will change and new symptoms may crop up as old ones fade away. Strengthen your immune system while you treat and try to keep your body moving, though I know how difficult that can be.

That being said, I'm neither a doctor nor play one on tv.

They are also VERY hard to catch on tests. Repeated PCR's are necessary, and even they can miss them.

Even the best of the best LL's can have one of these co's elude them, and understandably so.

Plus, clinically, all the symptoms overlap, making it very difficult to isolate them that way, too.

The wonderful Doc J for kids..says he goes along first treating what he knows is there based on tests, ataying with baseline Lyme treatment that seems most effective for the patient,

then, if the patient plateaus, or gats worse, or turns up with new symptoms..he will carefully assess the situation, and sometimes a best guess for trial of co-infection treatment is necessary.

With Mycoplasma and Bart treatment, I think you can notice changes relatively quickly (meaning weeks) the trick is to know when they are DONE..babesia is much more elusive and harder to get rid of, and a rel culprit in chronic Lyme cases.

All thin IMHO, based on conversation, observance, and experience.

Finding in depth articles posted here on Bart, Myco, Babesiosis helps.

I am a year and a half total into treatment after an EM rash..and only recently found out I have Mycoplasma.

You have to be aggressively astute and do your detective work. The sooner you know which ones are thwrere and treat then, the better.

Mo

quote:

---

Originally posted by TheCrimeOfLyme:
I see this also, not just in newbies, but in some long term posters here, and eventually, people that return- they have a coinfection that went undetected.

---

My Dear Crime,
Your letter was most helpful. I'm in the camp of being + for Lyme, been treated with successes over the past year but continue to have stubbon and life limiting symptoms.

I've researched options and will go with Bowen and getting tested for all the co-infections and a re-check for Lyme (since I used IgeneX the first time - which were fine). Tested for Babesia then and that was neg. I had night sweats so we suspected something going on.

My dear 80 yr old Mother we privately call "the sweaty old lady", she's had for YEARS a problem of profuse sweating, during minor exertion, mainly head and torso. It's now happening to me at 43. It's not med related for either of us. Her docs pump her with prednisone for polymyalgiarhuematica (sp?) and now she's steroid induced diabetic with myriad other issues. Including life long unexplained pain. She's probably a Lymie...I know, I know.... but ya can't lead a horse to water and all that. Although she's listened and cares for what I'm going through.

Anyways, I got a subscription to CALDA and their special Summer 2004 Patient Guide has an excellent section on co-infections, the ticks that carry them and symptoms.

I am taking a short break as I have to travel to a conference on cat health (my regular work that at least keeps me useful in the world while home bound with Lyme) and then mid-Jan will get the full panel for co-infections from Bowen.