My name is Shauna and I was bitten in Africa by a tick. I got the EM rash and was 'treated'. This was when I was 11 years old. I lived in Southern Africa for 11 years afterwards, so I could have been exposed many times. I also have pets.

I was not diagnosed for 6 years after the symptoms started. Like many of you, I have had many excused pulled for not treating my problems. This all started up when I came to Canada.

I suffer(ed) from severe migraines( requiring opiates ) joint pain, fever, chills, depression, mood swings, insomnia, cystitis etc. For me, the fever is the worst, as my personality/self alters with it.

After a complete fluke I found on an intersitial cystitis support site a link to Lyme Symptoms. My initial illness and memories flooded back. Of course, this was IT!
I was relieved to have finally found a group of people with the same febrile symptoms.

One poster from a yahoo group recommended I try this Canadian doctor - and I haven't looked back so far. He found Rikettsia on my third ELISA ( we did three in a row, on three consecutive days, when I was at my most flared ).

My MD has been supportive of this treatment, but also doesn't fully understand it, though he tries to. He was good enough to let me do the labwork at IGenex if I wanted to, etc, but he just didn't know how the heck to treat this. Frankly, he seems alarmed at all the ABX I am starting.

Well, last week I had an adverse effect from the quinine - I had hearing loss and psychosis. It was so un-fun and I was alone. The ER didn't catch the problem, neither did the two pharmacists. I started the Clindamycin with it aswell, and noone bothered to assume it was a SFX except I knew I was not well at all.

Interestingly after my FIRST abx treatment on Flagyl and Biaxin I started doing alot better.( 6 weeks ago I started this TX )

He has now switched me over onto the more difficult combo to deal with the suspected Babesiosis.

I understand Mepron can be quite a difficult course to do, so I hope to have my hand held through this, even if it's just a cyber hand. Last weekend on my own was so frightening, and my friends etc, also wouldn't know how to deal. My stepdad will fly down here on a moments notice. I am lucky that way. But I also don't want anyone around, as I don't feel well, and well, I am not the best to be around.

This is as short as I could keep the intro, but we all have similar stories. You would think because I lived in Africa that people would take more notice of what I am suffering from. But not so. It was up to me completely, to get myself well.

In addition I do practise alternative health options such as salt therapy, herbs and Supps. ( WITHIN REASON )I am starting a mini yoga routine - and I hope I can sustain it.

Another Lymie Friend on the Net recommended this group.

It's good meeting you all. I love this group - the one group I was in had alot of infighting and people trying to sell their supplements etc. People fought over wether one should even take ABX'es or not - something that is such a medical no no.
There was a constant heated discussion about it being sexually transmitted or not- and there was so much misinformation, I am so glad to have come here, where it really seems like you support each other, even if someone isn't having a good day, and not coming across 'lucidly' and clearly.

Have you heard of artemesinin? Might do a search of the lymenet archives on this. Getting used, researched, recommended by World Health Organization. Lot of us have included it in our babesia treatments and had good luck. Non-prescription, herbal formula at least in the U.S. Don't know about Canada. Can you get the anti-malarial Riamet there? It is prescription and based on artemesinin herb. Can do an archive search for this too.

Welcome.

May I ask though, why you all take it? Does it really 'add' to the treatment? And why can one not take it alone?

GREAT to hear that you tolerated the Mepron - I will hopefully be as comfortable as your were...

" quinine and clindamycin treatment for babesia has been pretty much replaced by zithromax and mepron because there are less adverse effects. There are lots of posts in medical questions about this. Have you been tested for co-infections?? since you were in africa maybe a PCR for malaria? What were you tested for and what were your results. What meds are and have you taken?"

Ah I misread your post. So the zithromax doesn't cause the colitis then? It does seem like a heavy hitter - and the LLMD did say it was stronger. ( I am not sure if that means better? )

I have been tested for co-infections, but from what I understand he said they are hard to detect on the ELISA? He said a PCR is only possible in Canada if you have an ELISA postive. I asked if I could pay for it, and he said, even then they still may not do it. He told me later we might still send away to IGenex for that.

The first ELISA was done at the CDC and even with my history, they only did the one ELISA and I was pronounced perfect .

This time Dr M did a three day in a row test - three consecutive ELISA's ( if pos then a PCR for brucellosis and babesiosis ) the ELISA would have to pick up the Babs.
I had to go in when I was at my sickest to get the blood drawn.

Then I got a result on my third ELISA which came up with a low titer for Rikettsia - meaning that I had HAD it and fought it off successfully. But that he felt it didn't preclude me carrying Lyme OR babesia or any other infections.

So I am dxed as clinical lyme, even though when I was bitten when I was 11 I had that big bulls eye, and was sick, and not on the ABX for long enough. Dr M seemed very relieved to have found some direction for me to go in , but in speaking to my doctor, said he might not have have treated me, had I not responded to ABX'es...?

Originally I had come to him saying that the Cipro which I would take for my post Cystoscopy infections would take away the symptoms I was having. That was a big warning for me and an indicator this was more than CFS. No I didn't have any malaria tests - I have not been in any 'malaria areas' and was always innoculated - I may ask that of the specialist next time....do you know anything about malaria?

Dr M put me on Biaxxin and Flagyl six weeks ago. Immediately I noticed how much better I felt - I could think better - less depression, and my joints didn't hurt as much. Moreover, the nightsweats have now become 'mornings only' and don't last as long....so with that information, DR M decided to put me on the Mepron.
But I coudn't afford it....

...So we went with the quinine and clindamycin and I had that horrible reaction. I stopped the meds for two days ( after being on them for 2 days ) and now am restarting the clindamycin 300 x 3 and Mepron today. ( a family member decided to lend me the money after last weekends disaster ).

Same old story, over and over.

Doctor without much experience with Lyme and co-infections, ordering not enough tests, or wrong tests.

Like Lyme ELISA-I tested negative twice wtih that-my doc told me "we don't have Lyme around here"- test has a high false negative rate and should not be used-I asked for a Lyme Western Blot and ther it was-CDC positive Lyme diagnosis-from a generic lab

Yes, igenex is great but if you can't afford it see if your local doc will order a Lyme Western Blot. Get a copy of it and post your result here. It only takes one Lyme specific band

But,in regards to lyme, this is all mute because if you had a bulls eye rash-you have
Lyme

good Canadian lyme site www.canlyme.com

Yeah we cannot have the western blot
OR a PCR done in Canada without the initial LYME ( and not co-infections etc ) bands on the ELISA positive.
So I just don't qualify for the western blot or anyothers. It's the same for everyone here. So unless I pay for Igenex myself, there is no way with the canadian health system, you can obtain western blots
It's MADDENING , isn't it?
It took me 6 years to get this far!

PS - day 2 on Mepron and so far, no side effects... Am I in the clear?

pps- thanks for the site - its great we can talk about the canadian system,which is difficult as you can see...

'Yes, igenex is great but if you can't afford it see if your local doc will order a Lyme Western Blot. Get a copy of it and post your result here. It only takes one Lyme specific band

But,in regards to lyme, this is all mute because if you had a bulls eye rash-you have
Lyme'

good Canadian lyme site www.canlyme.com
[/B][/QUOTE]

A great idea would be if Lyme patients could go to a patients place or home and 'rent' machine time. That would be so much better for those who cannot afford the whole shabang?

Welcome to this 24/7 support group board!
Here's TREEPATROL's and tincup's combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net