My husband has Lyme, here in the Uk there appears to be only one Lyme Specialist, Dr Owen of Cardiff, Wales (there was one other chap in the NE but he retires this Jan). He has had 3 blood tests done in the UK, all approx 2-3 months after being bitten twice last summer. All came back negative, the last one going to a specialist Lab in Inverness, they even did a Western Blot, but on blood samples well over 2 weeks old. As a result the 2 local Doc's implied he was over re-acting and he was told it couldnt poss be Lyme, his first Specialist even told him that it couldnt be Lyme it was just a "simple" headache.
Seeing Dr Owen was a welcome change, he confirmed that David did have the classic symptons of Lyme and said that ideally he should have been given intravenous abx straight away. He prescribed 300mg of Doxy per day for 3 months, and David is now on his last month. After the 1st month he had a Herx reaction which lasted approx 4-5 days, during the 2nd month the Herx was only 2.5 days. But recently he is getting quite a few of the symptons back again, especially head buzzing, noise intolerance and joint aches in his knees & back.
Can anyone confirm that they have experienced anything like this and that it is a normal reaction? David is adamant that he doesnt want to contact Dr Owen again until the 3 months are up. If someone could re-assure me I'd be grateful.
Also has anyone had any adverse side effects to the Doxy which mighten show up in his system yet? Is there anything I can do to help with his diet etc?
Last edited by oliveoil54; 01-13-2007 at 04:14 AM.
David's symptoms/experience sound familiar, just when I think IT'S GONE, my symptoms come back, and not always in exactly the same manner. It can be very disheartening; however, a few days of normalcy strengthen my resolve to prevail over this illness. We have to gather information from books, the internet, and others. Unfortunately, we can't rely on our doctors alone.
I started 200 mgs doxy 4 wks to the day of being bitten, gradually felt better, symptoms kept returning, 30 days later my doc said "no more abx for you", so I found the nearest lyme specialist about 1 1/2 hrs away. He upped my doxy from 200, to 300 mgs daily. I weigh 150 lbs - he said I needed at least 300 mgs to cross the blood-brain barrier. I wonder if your husband might need a larger dose?
I was on doxy for 4 mos, then switched to 500 mgs azithromycin daily, on 4th mo. now. I also take a daily anti-inflammatory and sometimes use muscle relaxors. Taking daily allergy medication helps me. I am MUCH better, but my symptoms continue, usually intinsifying every 20-26 days. It is helpful to record your "events", patterns usually emerge. It is my understanding that you should continue abx for 6-8 mos after being symptom free.
I avoid salt, sugar, white rice/flour, caffiene, and alcohol of any kind - they all work against me. I eat yogurt daily to avoid yeast problems, drink lemon water, and eat a fresh clove of garlic daily. It is important to avoid stress. When David feels able, exercise is great--but don't overdo it! Physically overdoing it is counter-productive. Also, the abx can make you extremely sun sensitive.
I was in England in '95 and loved it!
Best wishes to you and David, jillyanna
hello there ireaallly wanted to talk to you as amonggst other diagnosis there is suspision of lyme and i have very bad neuro symptons how can i get in touch with this guy. mine all started from a tic bite 2 years ago. please help me i did one amoxy recently and my body went in to over drive.
Hi oliveoil54. I am sorry your husband is sick and that is was so difficult to get diagnosed. It is terrible that so many doctors worldwide are ignorant of tick-borne illnesses.
How long was he sick before getting diagnosed? Was your husband tested for all the co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa? This is very important. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress.
It is normal to feel worse before feeling better when getting treated for tick-borne illnesses. It can take some time, especially if he has been sick for a while. Some people herx and feel better when they are not herxing, some people feel lousy for longer periods during treatment.
It is important to learn as much as possible. I recommend reading
"Everything You Need To Know about Lyme Disease (2nd edition)" by Karen
Vanderhoof-Forschner and Dr. Joseph Burrascano's treatment guidelines. He is one of the top Lyme doctors in the US, and many Lyme doctors follow his treatment protocols. He discusses diet and supplement recommendations toward the end.
Many people who have Lyme feel better when they eliminate processed carbs and sugar.
I hope your husband feels better soon. He is lucky to have your support.
Dr B is def David's bible!
Will try & get the book by Karen V-F will prob try Amazon.
He was bitten in July and eventually got treatment from Dr Owen mid November 2006.
In my opinion the only proper blood test (the other 2 were done at local labs & I'm sure they wouldnít have known what they were looking for) was done at a specialist centre run by Dr Ho-Yen in Inverness, Scotland. DR H-Y seems to have had quite a bit of bad press in the UK re some of his pompous articles i.e. if someone doesnít test positive for Lyme then you havenít got it! This also seems to be attitude of most of the Uk medical profession! This was done mid October it took approx 10 days for the results to come back negative, Dave saw his local Doc and kicked up a fuss as she was trying to dismiss him as a hypochondriac. After she consulted with Dr H-Y, he agreed to do a further test (western blot) on the same blood which by now would be over 2 weeks old, which again unsurprisingly came back negative.
She suggested that as a precautionary measure she would agree to give Dave 2 weeks @ 200mg per day of Doxy. Even tho he tried to point out that in the Uk up to 90% of blood tests analysed were given an incorrect diagnosis & as much as 60% of re-tests on exactly the same samples sent to specialist labs in the States were coming up positive, after initially being negative. The UK labs do not have the correct training in analysing for Lyme, Dr Owen the only Lyme Specialist that we have found in the UK actually sends his samples to the US for accurate testing!
We thought by providing copies for her of Doc Brrascano's guidelines & the USA Gove guidelines which are light years better than the UK's (which are - if someone doesnít test positive for Lyme then you havenít got it), she might actually read them and give Dave some proper treatment - No.
However she did agree to follow a recommendation from Dr Owen. So we took the 6 hour journey to Cardiff and saw Dr O, he diagnosed Dave as having classic Lyme symptoms and as it was too late for intravenous abx he prescribed 300mg Doxy for 3 months. Dave is to contact him mid-Feb when abx treatment is finished and he will do a blood test - as I said previously he sends them to a specialist lab in the States so hopefully maybe we will know one way or another then, and maybe they will test for the other co-infections as well.
As for testing for the other stuff in the UK - you are joking!
There is a wry comment in the Lyme community in the UK - if you know you have definitely broken your leg, and if a blood test was required to determine this and it came back negative - the UK medical profession would tell you that you definitely HAVE NOT broken your leg!
Have already started to alter his diet, as I'm dieting too.
thank you for your advice they mis diagnosed me with lupus and steriods messed me up. i have been demented seizures pain like meningitus in my head look like a n anorexic. i have support from no one. any words of advice how bad were his neuro symptons>
Hello Oliveoil54, I'm sorry to hear about your husband. Try to keep as positive as possible even tho that can be extremely hard at times! I started out on 200mgs. of Doxy then soon thereafter went to 400mgs/day for about six and a half months. The Doxy seemed to help but after awhile I started lapsing back into the same old symptoms(kind of on and off) and also started to feel like my body was getting very tired of the doxy so now I've been switched to Ceftin which is going okay, I have to increase the dose to 2000 mgs/day next week. I have neurologic problems/involvement(along with the other regular Lyme stuff) and I'm trying to eat right(I've been a vegan for about 16 years) and excercise to avoid having to go the intravenous route for abx as I've had Lyme for many years. I just started treatment back in May of '06. Anyway, the best of luck to you and your spouse. Don't worry, he'll kick it!!!
My husband's symptoms were head tremours - he described it as if someone had given him a slap across the head. These would occur regularly some times 5 or 6 in a less than an hour and even while he was trying to sleep (this would also make him feel nauseous till he got used to them), internal head resonance, noise sensitivity, constant feeling of light headedness, major panic attacks (something he def wasnt prone to), night sweats, poor sleep pattern, lack of concentration (esp at work), memory loss, at the time he thought he was going mad!
They were terrible/constant for the approx 2 months then the symptoms reduced slightly but seemed to get worse & come back in cycles. App this is to do with the Lyme bug's lifecycle within your body, as they reproduce on roughly a monthly basis it gets worse during that time.
Now he's on the Doxycycline his symptons have decreased a lot and he seems to get a re-occurence again in approx a monthly cycle (known as a herx - there are other threads/posts which will explain what a herx is). This we hope is indicating that the bugs are dying and being ejected from his system. He has also had a return recently - occasionaly of the head buzzing, but has been re-assured that this is to be expected.
However, my main advice is to make an appointment with Dr Owen if you can afford it. The difference he made to my husband was enormous, at last there was someone who understood exactly he was going thru, and could help him!
i took 4 doxy today and threw up immediately. wherever i have beeen on antibiotic i get better after a while and then sometimes at the beginning of a course get really sick first. terrifying head pains. flaoters visual changes hair loss speech loss cognitive problems my rheumie told me i had severe cns problems they thought i had lupus for ages still a ? seizures twitches vertigo loosing sensation paralysis various parts of the body. i am a neuro mess and have become demented at times. cant understand why i threw up ten minutes after taking the antibiotics is this s good signmy face has gone very white where the rashes used to be. headaches so bad i feel like screaming from themlike i have meningitus or swelling there yes i get those tremors in my head and sweats. where did you live where was he bit
From the sound of it you might have a bad allergic reaction to various forms of abx, are you ensuring that you take the tabs spread out over the day with food and no milk products?
Have you stopped taking the steroids? Steroids are known to decrease the effectivness of abx.
Is your own Doc sympathetic? Sounds as if he/she must be as at least they seem to be prescribing abx for you. Have you managed to keep any of the doxy down?
Also are you drinking any alcohol whilst taking the abx? According to Dr Burrascano (please read his guideline) alcohol, can cause severe nausea & headaches. He also says that several days after the start of abx treatment the symptoms can really flare up, this is typically a herx reaction.
Ticker one of the Senior Veteran's on here gives a concise explanation of a Herx :- "The Jarisch-Herxheimer Reaction (herx) is a reaction that people who have Lyme can experience when they take antibiotics. Their symptoms may become worse or they may get new ones. When the antibiotics kill the bacteria, toxins are release making them feel sicker. It can be very scary but it is a good sign the antibiotics are working. Herxes vary individually, but many times people experience them when starting treatment and every three to four weeks".
I really hope you manage to see Dr Owen soon, as you sound so ill.
Fortunately or unfortunately we live on the Scottish borders, our cottage is surrounded by forest where there are loads of wildlife including a lot of deer. David was in shorts & t shirt during the hot spell in July last year, now of course we both know much better and wear appropriate clothes at all times either when out in the garden or just going for a walk. We also do a regular tick check when we come back in.