My new doctor was so nice the first time I met her, telling me even if it isn't Lyme we'll do tests and try and find out what it is, and she seemed to know a bit about Lyme treatment as well. She said if I'd really had Lyme for 1,5 years before being treated with two weeks of AB I would need several months of AB, possibly through IV. She also said it was a good idea for me to go get a western blot test in Germany (I'm Dutch myself) and she would draw the blood for me, so I could send it to Germany. It all sounded so good.

Then, she got the medical files. The next time I came to see her, to discuss testing, it was like meeting a totally different person. She said there was no proof in my files that I had had Lyme for 1,5 years before receiving treatment. There are quite a few descriptions that closely resemble Lyme in my files, but ofcourse it doesn't say "LYME DIAGNOSED" untill I got treated. As if a doctor would diagnose Lyme and then wait for over a year before prescribing treatment :S what DID she expect???

So the doctor said I had only just got Lyme and then was treated adequately, it was cured and there was nothing they could do. I said there is quite a lot of proof 2 weeks of AB don't kill it in all cases, even after having it for say, a month. She then said I had probably never had Lyme at all as I've never had a negative test before I got positive (I was ofcourse never tested on Lyme before I had symptoms, so again, what DID she expect???). So I had probably always been positive and it had "no medical meaning" to her (I now wonder what'll happen if one of her patients is positive on HIV on their first test...)

I then asked her about testing for other stuff. She said she didn't think she would be able to find out what it was, and therefore wuoldn't do a single test (so all of her conclusions are drawn from a file the other dr. created). She didn't think it was psychological either. It's physical, but we're not going to do a single thing. I asked if she thought I could at least get psychological help for dealing with this, but she feels I don't have the right mindset. I will only get psychological help if I accept that my symptoms have no cause whatsoever. I personally feel that is a very unhealthy, depressing way to think if you have to face a lifetime of illness and pain.

Then, as if that wasn't enough, she cut me off my carnitene-pills. I have been diagnosed with carnitine deficiency by a dr. in internal medicin (don't know the short word for that) through a blood test. But, because my GP never put this in my file, she refuses to give me my meds. If I don't take them I get in trouble with my heart, and I have so much pain and so little strength that I can hardly get out of bed. She says she "doesn't believe in carnitene".

She also refused to draw blood for my German test, and wouldn't give permission to a nurse I had found who would do it for me if she gave permission over the phone. I had to drive all the way to Germany, 6 hour trip, walked in gave blood and was outside again in 5 minutes. Have been in bed since, it was too much for me now especially without carnitene. I have some pills left that I try to spread over the upcoming weeks, hoping for a miracle. I can't get a hold of the internal medicine dr.'s office. I have about 2 weeks of pills left, I try to spread them over a month. After that, I just don't know what to do.

I am now waiting for my results from Germany, but I'm a wreck. I can't sleep, which makes my symptoms worse. I take painkillers but am afraid to get addicted to them (have been before). I smoke weed to lessen the pain and relax my muscles, and I am addicted to that now. Well addicted... If I have a good day I can easily go without, but I can't remember the last good day I've had. I used to smoke it once a week or so, now I light my first joint just after breakfast. I worry constantly, and as I can hardly get out of the house I don't get much distraction. I feel so hopeless. I know I should just try to hang in there untill my test gets back (about a week from now), and I try, I really try. But the thought of a negative test result just scares me to death. I feel as if my life depends on this blood test, because I really don't see what to do if it comes back negative. Also I feel afraid a lot more often. I sort of feel as if I trusted someone (GP) and then was stabbed in the back. Normally, I never get this emotional about people behaving like jerks to me. I feel as if I have no skin, no protection from anything anyone wants to throw at me.

I ly awake all night, tossing and turning and trying to come up with a plan. I don't see it. I have always been a strong, independent person. I used to be homeless, and worked my way out of that. My childhood was horrible, and I got out of that. I was raped and had a false positive HIV test after that (age 14). I got over that. I don't know how to get over this if the test says it's not Lyme. Even if it says I have Lyme it will be so difficult, but I think I can handle that. It's just the constant "what if..." that keeps me awake and shaking with nerve.

I could really use any kind of support, advice or help you could offer me. I have a couple of friends and a father I can talk to but due to several reasons all of them are quite busy now. My dad for instance is working 2 jobs and recording a cd. I'm alone a lot (I live alone) and some days, like today, I just can't take it anymore. So please, if you have anything positive to say, do so. Any tips to get to sleep / calm down are very welcome.

I'm so sorry to hear you are struggling, and wish I had the just the right words to comfort you.

Can you change docs? It sounds like this new one is a waste of time as well! You don't deserve to be treated badly like that...so if you CAN change docs, you might consider that. If you can -- if you want to - you can go back to that doc and DEMAND what you need, otherwise you'll walk out the door. It's not fair that docs think they can treat poeple so carelessly & thoughtlessly. And its obvious she's not well versed in Lyme, otherwise she wouldn't have said all she did.

As for your test in Germany. Relax. There's nothing you can do but wait, and worrying is only going to make your body more stressed, which is NOT good for your immune system.

Something else that is not good for your immune system, altho I will grant you it may be helpful as a pain reliever, is the weed. Weed is NOT good for your immune system -- or so I believe. Do some research - that'll keep you occupied.

But I also know that if you are already depressed - weed is gonna just amplify that - so do yourself a favor & give it away to a friend.

Rent some funny movies and do your best to boost your own spirits - it'll help you in the long run. I know it will be hard to let the weed go - but I believe you can do it. I think that, with weed, it's usually more of a psychological addiction, rather than a physical one. Just my opinion.

Again, I wish I had some magic words to pull you up & out of this valley - but remember - that most of us can relate to it. And we all have 'valleys' that we have to walk through. Just remember to keep walking, honey. "This too shall pass."

You'll be in my prayers.

Blessings,

it's a shame you can't get the carnitine from your local health food store like we can. Can you order it over the internet?

You might try www.vitacost.com and see if they have it.

I hope your test comes out + ...but will your dr then treat??

click on Dr b-he's in holland

some say he's great, one newspaper article was damning

I am also from the Netherlands and since there is no real LLMD in our country, I visit the one closest, Dr AW in the UK. He is a private specialist, you can make an appointment with him (2 or 3 month waiting list) without the interference a your dutch GP. Dr AW can give you a 3 month supply of any anitiobiotic that he supplies. He does blood microscopy to diagnose and can send your blood to bowen or igenex. So you don't need your doc in the Netherlands. Be carefull though that one way or the other your blood work gets monitored every few weeks or every month while on abx.

Several weeks or months ago, following on eo fyour postings on Lymenet, I sent you a private email with Dr AW's details. I am not sure you received. Let me know if you want to receive the details again.

All the best!

Ronald

A lot of patients (mostly british) of Dr AW visit and post on that site, as well as others from various EU countries

There is some carnitene available here through gyms (mixed with all sorts of vitamins and stuff) but it's very expensive. I take 11 grams a day now, roughly 1400 euros a month but my insurance covers it. I don't know how much it would cost to buy in gyms but I'd say a lot because these bodybuilders don't take half as much as I do and they complain about the prices all the time.

Janet, I'm going to check that link. Thanks!

Daphne, good luck. The doc in great britain has helped many folks. There is also one with an excellent reputation in Denmark. You're clearly a very strong minded person; I know you'll surmount these hurdles. Once again, though, I'm flabergasted and horrified at the level of casual cruelty being practised on patients.

Costs of a visit to Dr Wright are:

- first visit: (consult of an hour) GBP 150 (if i remeber correctly), about euro 225
- following visits: (half an hour) GBP 90, about euro 150
- Apart from that, take an easyjet flight to liverpool, book well in advance, it'll cost about euro 100. Stay in bolton for the
- Stay at a cheap hostal in bolton or liverpool (I can give you some names/addresses if you like): euro 30

Apart from above costs, the total costs really depends on what kind of bloodwork you request. Dr AW is very much willing to listen to the patient and depending on his/her budget request tests. He can do blood microscopy at his office to diagnose you, i think it is included in the consultation fee. I requested a bowen test which is another usd 250. You can have him send your blood to igenex for testing of co-infection, by serology and/or pcr, in which case costs will rise will another usd 1000.

Then, there are costs of antibiotics. He is also willing to listen to your request / tailer the regime to your budget, you can do it really cheap (for instance amoxy + metronidazole) or go a bit more expensive (clarithromycine +plaquenil) or intramuscular ceftriaxone, etc... Ofcourse it is all "trial and error" and should be individualized.

Dr AW is definitely not a Duck, he is a very real MD, specialising iin chronic borreliosis as he prefersw to call it. He treats with antibiotics, and other medicines if necessary, such as armour or thyroxin, etc.

Good luck

Ronald

Netherlands website www.lymenet.nl