my husband was just diagnosed with Lyme last week. we live in france and are sort of flailing around for information and/or a well informed doctor. our doctor has prescribed 6g (6000mg) of amoxicillin for 2 weeks. Does this seem normal?
my husband is flat out, nearly unable to walk or feed himself and is covered in a horrendous rash since this morning. He has had no feeling along the left side of his body for nearly 2 weeks.
The doctor seemed to think it should all clear up in 4 or 5 days of treatment.
I'd like to know if anyone has heard about this treatment from switzerland called Tic-tox and whether it can be taken concurrently with antibiotics.
Also, would acupuncture be a help at all?
Thanks very much for any guidance.
Posted by gwb (Member # 7273) on :
Sorry to hear about your husband. Do you know how long he's had
Lyme disease? Hope it's been recent as it will be easier to treat and
overcome if that's the case. 3000-6000 mg of amoxicillin is what
is considered normal for this medicine, however, two weeks of
treatment is not sufficient at all. Your husband needs to see
a Lyme literate medical doctor (LLMD) to get the best treatment
possible.
I have no idea what Tic-tox is so cannot advice on that. No
experience with acupuncture either but I'm sure others here
have. There will be others responding to you who will offer
some great input and guidelines. Glad you found us and I hope
you can find a LLMD in France as it's best to be treated by a
doctor who specializes in this disease.
Gary
Posted by gwb (Member # 7273) on :
Somehow I double posted. Have no idea how it happened. Sorry. Posted by sixgoofykids (Member # 11141) on :
I agree. He needs to see a doctor who is well-informed/trained to treat Lyme Disease. The dosage is good, but it's extremely unlikely he will feel better in a few days with the symptoms you describe.
A "short" treatment would be 28 days. Many here have been treated for several years. It all depends on how long he has had it, what coinfections he has, and how he responds to treatment.
I see you are in Europe. I went to Germany for Bionic 880 treatment .... search the forum there are many threads on it. You can also get information on it from my blog .... you might start at the first posts rather than the most recent (I have no financial interest in the Bionic at all).
It's good you are doing so much research. Acupuncture might help with some of the pain.
Posted by bettyg (Member # 6147) on :
welcome tessa in france
first, take photos of your husband's bulls-eye rash from different angles using a coin or $1 bill to show the SIZE of it compared to money and with TODAY'S DATED NEWSPAPER CLEARLY VISIBLE in photo ok might be needed later.
your husband is being UNDERTREATED; please print off both dr. burrascano's lyme guidelines and my 2nd one showing DOSAGES/MEDS FOR ADULTS & KIDS ... i broke that up making it easier to read this crucial data!
i have a friend who lives over there and has some limited lyme literate info for switzerland. my private messages are NOT WORKING; problem from lymenet programming.
so please send selma a private message using this link ok and tell her bettyg referred selma to you: ************************************************
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
I'm a bit concerned about a rash that is 'horrendous' and just appeared this morning. What sort of rash is this, can you describe it or post an image?
And how long has your husband been 'flat out'? Is this due to the medication, along with the rash? We must be very careful here. It is sometimes very difficult to know if this is a medication reaction, or a disease reaction from the medication 'working'.
Please contact your treating physician, and make them aware of this situation. Better to be safe, OK?
Posted by TF (Member # 14183) on :
Tessa, since you said your husband is "covered" in a horrendous rash, I think it is likely the rash is from the amoxi.
I am assuming "covered" means the rash is all over his body. Right?
Hypersensitivity reactions can occur to this medication. They include rashes, hives, itching, and serious life-threatening reactions such as exfoliative dermatitis and anaphylaxis.
So, I think it is very important to call his doctor and describe what is going on. He may have to stop taking this medication.
Posted by Hoosiers51 (Member # 15759) on :
If the Amoxicillin is giving him the rash, Doxycycline is an alternative for Lyme.
Posted by nellypointis (Member # 1719) on :
Tessa,
I just sent you a private mail
Tic Tox is basically a mixture of essential oils. I wouldn't trust it to work on Lyme once it's established. Probably as useful as any disinfectant when rubbed on the bite just after the tick has been removed (my opinion only, the makers of Tic Tox will tell you otherwise of course).
Nelly (in France, co-moderator EuroLyme)
Posted by n.northernlights (Member # 17934) on :
There is a large group of German doctors practicing by the ILADS guidelines, and prescribing long enough antibiotics courses. Germany is hopefully not dso far away from you.
I think you can get a list of german ILADS doctors from the american ILADS website upon request.
Otherwise, there is a clinic, Borreliose-centrum Augsburg that specialises in borrelia and people travel there. I do not know if these qualify for coverage by insurance, but lots of German patients are covered by insurance.
The alternative treatments that work that we heard of, is biophoton treatments in Germany and a few here have tried it and over 90% so far are quite well after three weeks treatment and they are mostly off antibiotics too. Do a search here for bionic880 or bionic 880 and there is a website with a list of all practitioners but not all specialise in borrelia treatment. Some are practitoners, some are doctors. Dr. Woitzel in Pforzheim is an hour and a half from France border.
by the way, I seem to vaguely remember they do not have doxycycline in France but I may be mistaken. Often we read on forums that people are put on doxycycline first, but on a too low dose, like 100 or 200 mg, the latter is only enough for a person of 50 kg. 3-400mg is better.
Yes, your husband should be better after a few days, but one must continue treatment for at least two months after one is completely well, and ordinary doctors just do not do that.
nora europe
Posted by tessa (Member # 21496) on :
Thanks very much for all this information.
The tick bite was end of April and the standard stage 3 symptoms started in mid-June (sore knee, flu sypmtoms, slight tingling sensations) but we had so much going on that we took it as general fatigue.
The rash was indeed an allergic reaction to amoxicillin and its been stopped. Because the neurological damage has been so extensive, he is going in for tests tomorrow(MRI, CatScan) and they also want to do a spinal tap to "determine the exact extent of the infection". Is that standard operating procedure?
I shall check out these german/euro sites (we're about as far from germany as you get, but we'll do what we have to do). my husband is a concert pianist and to lose the use of one hand would end his career.
I can probably get doxycycline sent from the states if necessary but we will have to see what the results are first.
Thanks again, indeed.
Posted by Abxnomore (Member # 18936) on :
We have a member, nellypointis, who is from France. You can find her in the directory and private message her. She may be able to guide
you regarding doctors. Also there is a group called Euro Lyme Support Group. It's a yahoo group. You can Google it and you may find additional help there.
In general, if it is known that a patient has Lyme disease it's not necessary to subject a patient to an invasive procedure such as a spinal tap and very often the results are inconclusive or result in the wrong diagnosis, such as MS.
What you need to do is get your husband into the hands of a knowledgeable doctor, and LLMD, who knows who to handle this illness. There are co infections that can cause illness in addition to
lyme disease that he needs to be tested for, such are erlichia, babesia, bartonella to name a few. Even if the amoxicillian caused an allergic
reaction, which may not be the case, it could be a reaction to treatment, it sounds like he needs to be on a combination therapy of several different antibiotics in high doses, for example a penicillin type antibiotic and a macrolide or possibility an intravenous antibiotic and a cyst buster such as tinidazole,(Fasigyn)or flagyl.
One antibiotic alone will not help a difficult case of lyme and possible co infections and it could take many months, even years of treatment to get better.
It's essential that he get to an LLMD who follows ILADS guidelines. www.ilads.org Posted by nellypointis (Member # 1719) on :
quote:Originally posted by n.northernlights: by the way, I seem to vaguely remember they do not have doxycycline in France but I may be mistaken.
Nora, You SURE are mistaken!
Why on earth would anybody in their right mind even consider that such a common abx ie doxy would not be sold in France?!
FYI, France probably has the largest collection of abx of any country on this planet!
I sometimes wonder why people feel compelled to post about things they know zero about, that's how cretinous rumours spread through the Internet and that's how we are all given a very bad name!
Nelly (in France where about a dozen different brands of doxy are sold, both monohydrate and hyclate formulations)
Posted by Abxnomore (Member # 18936) on :
I thought that was a bit strange that anyone would think that France wouldn't have doxy or Europe in general.
They had Tinidazole long before Tindamax became available in America and we were having to have Tinidazole compounded in the States.
Europe's medical system in many ways is much more advanced that ours. That's where most of the medical break thurs are coming from, cutting edge especially with regard to cancer and nutritional supplements/herbs.
And you can buy medications for practically nothing. Whenever I visited I would buy mine there for practically pennies,France, Spain, Italy, Switzerland. Never had a problem finding any medications.
Now, I'm not talking about Lyme, because when it come to this disease we struggle everywhere and we do have many more LLMD's in the U.S. but good research about lyme and co's does come out of Europe, for example Brorson of Norway.
[ 07-27-2009, 11:39 AM: Message edited by: Abxnomore ]
Posted by TF (Member # 14183) on :
I would urge you to refuse the spinal tap.
In the U.S., lyme docs don't do this test. The infectious disease docs order it so that they can declare that the patient does NOT have lyme disease.
Here is what Burrascano says about this test:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children." (p. 8)
"Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment."
This is not your husband's case.
There are possible side effects of this test like a headache from hell (debilitating for days or longer) which you try to avoid by laying flat for the rest of the day after the test.
Others have had even worse complications. For example, spinal fluid can continue to leak out of the hole they made to draw out fluid. Then, you have terrible problems and have to go back in the hospital for a "blood patch" where they go in an seal up the leak.
The procedure itself is also rather frightening and has its share of pain.
I will never allow them to do another one on me. And, by the way, it was negative for lyme--but of course I had lyme, babesiosis, and bartonella.
You may want to read up on the procedure on the internet to learn more about it.
Posted by nellypointis (Member # 1719) on :
quote:Originally posted by Abxnomore: And you can buy medications for practically nothing. Whenever I visited I would buy mine there for practically pennies,France, Spain, Italy, Switzerland. Never had a problem finding any medications.
You weren't buying abx then!
a) there is no such thing as "Europe" when it comes to health matters (or most other things for that matter), each country is different
b)meds are not easier to get than in the US as you need a script to buy abx everywhere in Europe now (even in Spain)
c)I don't think they are cheaper either, but in many countries in Europe, we have very good health coverage so as long as we have a prescribing doctor we don't pay much for drugs (things they are-a-changing unfortunately!).
Nelly
Posted by Abxnomore (Member # 18936) on :
I have been in Europe many, many times, many different countries and of course I know it is not one country and each country has it's own rules. I have not been there recently, however.
Of course, things change and thanks for letting me know that they have but when I was there I did not need a script and the medications I purchased cost pennies compared to what I would have paid in the U.S.
And they all came prepacked which really makes sense. I purchased ABX and other medications, too.
I've not been to Europe since last 2007 when I visited Italy and did not have the need to buy any medications then.
We are getting off topic now. Probably best to get this post back on track.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.