posted
Sorry, this is probably going to be quite a long message, but I would appreciate some advice.
I have had Lyme since August 2002 when I was infected by a tick while camping. I didn't even know what a tick was and I was squeezing it and poking it and it was left it for at least 24 hours, probably a few days.
My illness was quite slow to start off with and the symptoms were very gradual, until Novemeber 2003 when I had a flu-like illness and all hell broke lose. I had chronic fatigue, dizziness, constantly felt spaced out and foggy, like everything felt surreal - these caused terrible panic attacks and anxiety. I had pains that migrated around my body, especially chest, shoulders, joints and back. I also had tinittus and light sensitivity and other annoying symptoms like heart palpitations/heart skips which I had to go to hospital twice to have checked out. Everything was normal, all blood tests and scans, X-rays, etc.
I was misdiagnosed with CFS for 4 years, during this time I just got worse and worse. I read up about Lyme and found a CFS/Lyme specialist here in the UK and he started me on Samento - I had a huge herx, or what I think to be a herx, that was absolute hell. I literally wanted to die because I was having panic attacks 24/7 with incredible fatigue. I was pretty much bedridden.
I was eventually taken into hospital by ambulance because it got so bad and I was having severe heart plapitations, etc. It was unbearable and I had to stop the Samento and I haven't been back on it since.
Soon after this incident, I started to develop even more symptoms, mostly visual symptoms (blurry vision, glare and halos around lights, after-images, floaters, dry eyes, etc, etc)
My LLMD then took me off the Samento and put me on supplements for one month to build me up and fix the mitochondria, these were high dose Magnesium, Fish oils, Vitamin E, Zinc, CoQ10, B-Complex, D-Ribose and Acetyl L-Carnitine.
After a few weeks these made a big difference in my energy, which made me feels better overall and I was able to talk more, etc. All my other symptoms continued, but it did help a bit with heart palpitations.
My LLMD then put me on Oxytetracycline 1000mg per day - I thought this was a bit strange because this drug is not usually used often in Lyme, infact I had never read anywhere of it being used for Lyme, but I didn't question his treatment because he is well respected.
I made some improvements after about 6 months and had some days of actually feeling pretty good - but then the improvements stopped and I started going back downhill. I really wanted my LLMD to add another antibiotic and after another 2 months (over 8 months on Oxy with nothing else) my LLMD put me on Ciprofloxacin. I think he said CPn is a common coinfection so he wanted me to try Cipro to see my reaction - nothing really happened at all.
He then took me off Oxy and Cipro and put me on a supplement called NAC - again for the CPn (which I might not even have) and it did absolutely nothing.
I then had a massive relapse and virtually went back to square one. I asked to be put onto a new reigme of Doxy, Amoxi and Tinidazole - these were taken 2 weeks of each, so Doxy for 2 weeks, then Amoxi for 2 weeks, then Tinidazole for 2 weeks. The problem is, the dosages on the Doxy and Amoxi seemed very low for Lyme - the dosage of the Doxy was 200mg a day, and the Amoxi dosage was 1500mg a day - the Tinidazole was the normal Lyme dosage of 1000mg a day. I didn't feel like much was happening on the 2 weeks or Amoxi and 2 weeks of Doxy, but on the Tinidazole all my symptoms got worse, like a classic herx.
I then had a review with my LLMD after one round on this protocol, and I was shocked that he took me off it so soon after just 2 weeks on each antibiotic.
He has now put me on a reigme of Penicillin V 1g a day, and Azithromycin 250mg on Monday and Thursday and also a drug called Ivermectin, which is apparently used to kill worms which he and a doctor in Texas think is a big cause of CFS/Lyme type illnesses.
I have been on the Penicillin for 2 weeks now and have felt awful and I am adding the Azithromycin tomorrow, but I am too scared to start the Ivermectin because the none of the doctors over here know anything about it, my own GP hadn't heard of it so it makes me wonder what would happen if something goes wrong - it is also VERY hard to get hold of and it needs to be got on a named-patient basis!.
So I have now been on treatment for roughly a year and I don't feel like I have got far at all. I personally think this could be because the treatment I have had so far, they seem to be low dosages and aimed at other infections.
What do you think of the treatment I have had so far?
I haven't yet been on a combination of antibiotics at all... Except for Oxy and Cipro, but I don't think these are even very effective against Lyme anyway?
I feel like I am losing faith in my LLMD and I might be changing to my local consultant instead, who is very open minded and knows that Lyme needs longterm treatment - he has the same views as ILADS. I think he would let me have more say in my treatment.
My other option is to travel to the U.S and see an LLMD there, but I don't know if I could cope traveling that far right now.
P.S) I was first tested for Lyme at the Bowen lab in Florida which was positive 1:64, coinfections were negative.
Then at the beginning of the this year, I went to a private hospital and had loads of tests done. Igenex IgM was very nearly positive with some IND on specific bands and 41 was +. Igenex IgG was positive by Igenex critera with 31+, 34++, 39IND, 41++, 66+. I was also tested at Immunoscienes and had their Lyme panel done - it showed antibodies to Borrelia Lysate, but nothing else. However, the Immunology results for Lyme shows loads of abnormalities. i had very high Lyme-specific cytokine response and other abnormalities. I also had the LTT-MELISA test done in Germany which showed reactivity for two of four Borrelia antigens. The hospital said this is confirmation that I have Lyme. All coinfections have been negative so far.
Posts: 263 | From UK | Registered: Mar 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I know that people come from UK to see my NY doctor.
I was put on Cipro for a couple weeks for a bacterial infection of my intestines. They didn't want to leave me on it longer, even though it was working for the Lyme, too, because it's a last resort abx ... it's even used for Anthrax ... so you don't want to develop a resistance to it. I don't know why your doctor would use it when there are plenty of meds he hadn't tried.
I am taking 7500 mg. Amoxy with Probenecid (keeps it at high levels in the blood). I'm only a 125 pound woman, so it's a high dose no matter how you look at it.
I also take 1000 mg. Biaxin, and Plaquenil (can't remember dosage).
I take Mepron and Artemisia for Babesia. Have you been tested for coinfections? I would be concerned about babs with the heart symptoms.
I do think you were taking low doses ... I also think it's a strange way your doctor went about it. But, I'm not a doctor ... it just seems that you were jumping around from med to med.
Personally, I wouldn't want to go to my local doctor who is willing but doesn't understand Lyme. I would find it worth travelling to an LLMD, then utilizing your local, open-minded doctor to support the treatment. That would be the ideal, in my opinion.
If you're not happy with the doctor you are seeing now, I'd change. If you don't trust him and feel you must direct your own treatment, I would change to a doctor you feel knows more than you do. Also, in working through your local doc with an LLMD, you can train a new LLMD!
Maybe you could get your local doctor to join ILADS. In that case, I'd go to him.
I don't know if I just confused the issue more or what ... I'm herxing, so I'm sure you understand how scatter-brained I am.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Chris, Do a lymenet search on Ivermectin.
I think Doc Dave used this...he might be able to advise you regarding its effects.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Those are low doses of amoxy and doxy. I weigh about 135 and was taking over 10g amoxy/day. Have since changed tx.
I think you should perhaps see the open-minded consultant willing to learn about lyme. If you were up to traveling, I would say, sure, come to the northeast and see one of the llmds here that many of us could recommend.
Will PM you with any more thoughts.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Thanks for all the advice, it's a great help. I am seeing my local doc next Friday, so I will see what he says and make a decision then.
I am thinking about being treated by him for a while, and if I don't make improvements then I will go to the U.S to see a more experienced LLMD and to have more tests for coinfections, etc.
I would like to go on a reigme like Biaxin and Plaquenil for 3 months - I have seen Dr. S did a research paper on this and it looks promising so I will see what my local doc thinks about it when I see him.
My GP doesn't know anything about Lyme and is just basically doing whatever my other doctors suggest, but she is perscribing all the antibiotics on the NHS, so all the antibiotics have been free so far, but I still need to pay for the supplements, etc which is expensive. I don't know how much longer my GP will perscribe the antibiotics for though.
Thanks again.
Posts: 263 | From UK | Registered: Mar 2006
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bettyg
Unregistered
posted
chris, thx for your informative post of the many things you have tried.
unfortunately, you have just a few llmds in England; these were not recommended by someone else who contacted me by pm.
i do think it's great you have a good relationship with your 1 doc who will treat ILADS method; at least that is in your favor.
chris, don't give up; we'll all trying to find that happy medium to QUALITY OF LIFE left for us all.
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Rememeber that tests for co-infections can often be negative - even when the patient definitely has them - so a clinical evaluation by an experienced LLMD is often necessary!
Sent you a message about travelling to US for treatment.
Take care Elaine
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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posted
Thanks bettyg and ElaineC. I have just sat down with my family for over 2 hours discussing this!
We have decided that it's best I go to the U.S for treatment - I don't want to waste anymore time and I would also like to have a proper examination by an LLMD.
I do realise that the tests are unreliable for coinfections, so hopefully an LLMD in the U.S will consider these and I will get tested for them again.
Hopefully for now I am going to be treated by my local doc, until I go to the U.S to see an LLMD. I'm not yet sure what protocol to ask my doc to try, I was thinking about Dr. S in Boston's protocol of Biaxcin and Plaquenil.
So I would really like some suggestions of LLMD's on the east coast who treat Lyme, coinfections and maybe other issues like hormones, viruses, etc.
I am thinking about Dr. H in New York at the moment and I have heard loads of good things about him. If you could PM me any doctors you would recommend that would be great, thanks.
Posts: 263 | From UK | Registered: Mar 2006
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