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Percentage of patients in wheelchair in late stadium of Lyme ?
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Posted 6/20/2014 9:55 PM (GMT 0)

Dear all,

I am from Germany and as in my country there is not so much information like here or in the States, I hope that somebody can help us, better said my wife.

My wife has got the result now fom a blood test and is unfortunately strongly positive to Lyme Borreliosis.

First she should take now for 21 days the antibiotic Doxiciclin.

For to be open : My wife has most of the symptoms already for years, I told here to go the doctor ASAP, but she never did so and now it seems to be the worst with her. She went to the doctor finally as the symptoms are now worse. She cannot remember any bite in her life, but I think there are many of such cases.

In my opinion she is aleady in the late phase of lyme borreliosis, because of the following symptoms :

- always very tired

- depressions

- swelling of lymph nodes

- nodes on area of head and ears

- strong headache

- arching joints in arms and elbows

- deafness in hands, especially she cannot grap with her fingers, no strongness or ability there

- snapng noises in column and heavily arching brain

- arching knee and heels

- piercingly pains in arms and legs

- falling weight in body

- freezing strongly, cold body

- desequilibrium in Body, Feeling of dizziness

- first signals of tinnitus

- bad temper, changing moods

- concentration problems

Due to all these symptoms I think she is already in the late stadium, but I hope that doctors can still help her.

21 days with the antibiotic medicine will not help, I guess.

I heard several times that in the late Stadium the organs do not work in right form and that the Patient will

have several forms of paralysis, that mostly Ends in wheel chair.

I am so afraid to see my loved wife in wheel chair.

What is possible, what can be done, can the wheel chair be avoided. What is the percentage of Lyme patients in late Stadium in wheel chair ?

Many thanks for your help and ideas !

Manuel  

Posted 6/20/2014 11:47 PM (GMT 0)
Manuel, by what you are writing I think that there is definitely hope and that your wife will not end up in a wheelchair. Many of us here have had these symptoms and have gotten better. Here is a link to all the reasons why your wife got sick to begin with. Something brought her immune system down and you need to figure out what it was. Look at this website, it lists a number of reasons why one would get sick with Lyme:

http://lymebook.com/beyond-lyme-connie-strasheim

What tests have you done? You are right that 21 days of doxy will not be enough. Just look around this forum, people have used different protocols for getting better. Lyme is very complicated and the reasons we get it are very complicated so there is no one size fits all. Proper diagnosis of underlying medical problems is a key. Hope you can find help soon. There is hope!
Posted 6/21/2014 1:30 AM (GMT 0)
Manuel - I don't know what you have available in Germany to help your wife.

Have you searched the internet for support groups in Germany - maybe someone can give you a Dr.'s name that is knowledgeable in Lyme disease treatment?
Posted 6/21/2014 2:26 AM (GMT 0)
Hi Manuel. I thought Germany is actually ahead in the world with regards to Lyme disease treatment? The German guidelines are actually pretty good that I read through. I am pretty sure there are some really good Lyme specialists in Germany. And lots of great alternative therapies like for example ozone therapy.
Posted 6/21/2014 6:41 AM (GMT 0)
Find a lyme dr in germany, 21 days treatment seems like treatment uninformed doctors in the us would prescribe. Her immune system likely needs support. Has she tested positive for lyme? Need to find lyme literate doctor. Maybe dr ken DeMelier (spelling?) Could see her. Sounds like you may also have it, did you get treated early and revovered? Good luck to both of you. I also thought germany was way ahead of united states regarding diagnosing and treating lyme. Infe to labs in germany is well respected if she needs lyme testing. Let us know how she progresses. It is scary but hope if she can get treatment. Maybe she could take the doxy just to get some in her system while you try to find an llmd.
Posted 6/21/2014 7:12 AM (GMT 0)
Hi there,

I'm a Brit living in Germany :-)

I've had Lyme for nearly 3 years and I can confirm your worries that German doctors are usually hopeless concerning chronic Lyme disease.

You could try Ausberg but I guess it depends where exactly in Germany you are situated.

I'm in Hessen and have been treated using herbs and botanicals,I'm nearly healed ,about 90 % of my former self.

If I can help you,let me know,I speak fluent German so you could give me a call.

ihre Frau muß nicht in einem Rollstuhl landen,es gibt sehr viel was mann machen kann,aber es kann sehr lange dauern.

Viel Glück und alles gute.
Posted 6/21/2014 3:27 PM (GMT 0)
Dear friends,

thank you very much for your comments !

My wife was only with a normal internest doctor so far, I think he did only a 'normal ' blood test. I do not know.

But in any case she was immediately positive in Lyme, I know that there are a lot of patients with several negative

blood tests not knowing therefore with Lyme.

I told my wife that she makes a new appointment together with me with the doctor so that we can go more into Detail or prepare for more detailed tests.

In any case I think my wife is now in a very important phase as the more agressive steps with deafness and arching

Joints are becoming more and more in last weeks - therefore she was going to the doctor, who - that was very good by him - thought immediatey in lyme.

In any case better her organs are checked in deep.

But I think you all agree with me that she's already in late lyme phase or not ?

She has got also Hashimoto for already at least 10 years, this is complicating the issue ?

She is every day taking L-Thyroxin 100

And she has got also a hyperlordosis with arthrosis lumbar

She's very thin with only 48 Kilos with 1,72 m ( in spite of the Hashimoto ) and not very resistant with diseases in general. 

I am so afraid of seeing my wife in wheelchair, because I saw already many examples in the Internet, she is not so stable and very unresistant, she has got already orthopedic problems with her column and primarily in her case now the neurological functions are falling out more and more in last days.

Again : What is the percentage of patients with Lyme ending in wheelchair ? And how far away is my wife still from that phase.

Hashimoto and arthrosis could have a negative impact on patients in late lyme phase 

Is my wife already in the late stage of lyme ?

Manuel

 

Posted 6/21/2014 3:47 PM (GMT 0)
Manuel if you get the right help the chances that your wife will have a healthy life and never be in a wheelchair are very high. As Tickledpink suggested please find a Lyme Literate Medical Doctor. I know that the clinic in Augsburg treats only with antibiotics and many of us here have found out that they did not work for us. Infectolab has the best Lyme disease test in the world

http://www.infectolab.de

I personally had to go to Sponaugle Wellness Institute in Florida where I personally saw several wheelchair patients get up and be able to walk again. You just need to get the right doctor. I am from the Czech Republic now living in the USA. I know a dr. in Prague who would be able to help you, my sister has Lyme disease also and she goes to him. She has seen some very good results.

I was first bitten when I was 8, bitten again at 40, and now I am 42. I started treatment in August 2013. There are many of us here who were once as ill as your wife. Ich war sehr sehr krank. Ich konte nicht laufen. I hope this is correct and that you understand. I lost my job as a teacher. That's how very ill I was. I am much better now. There are people here who were sick for decades and now are symptom free. Please have hope!

You can email me with any questions. Ich spreche ein bischen Deutch.
Posted 6/21/2014 8:35 PM (GMT 0)
Manuel, I just got diagnosis of hypothyroid or sub optimal thyroid. Never had thyroid issue before that I know of. Takinf Armour thyroid cause more natural option.

it is hard to say with certainty but your wife sounds based on symps she is late stage lyme at least according to various things I've read and videos watched. I dont think you can say with a percentage how many lyme patients end up in wheelchairs but if they do and the get the right dr to help them they can get right out again (have you watched the Under Our Skin documenrary, its on youtube).

In any case she sounds very sick and needs to see a lyme literate doctar asap. Di you look up kenny DeMeleir...he is a very knowledgeable dr, not just a lyme dr. Problem is it can take time to get into see him and your wife needs some support, treatment like yesterday. I pray god will open a door for you to get help for both of you. Great offer by the member in germany that speaks your native language, hopefully she will be abke to offer advice that xan get you help quickly.

I also lost my career a year ago from this awful illness. Dont give up, your wife is blessed to have someone concerned for her.

Post Edited (Roxie60) : 6/21/2014 2:38:04 PM (GMT-6)

Posted 6/21/2014 11:18 PM (GMT 0)
hello Manuel.

i also stop working.

i am also from Europe, and people here, where i am situated, talk a lot of a clinic in Augsburg.

they treat Lyme there. maye you should try.

http://www.aerzte-bca.de/index.php?id=108&L=1
Posted 6/22/2014 2:12 PM (GMT 0)
Hi Manuel,

I'm from Belgium.

The test at Infectolab is a very good one: Borrelia LLT Elistpot. You can order a test kit at home, they will send it to you. A doctor will have to take your blood, and you can send it through DHL at Infectolab. They have a special client number only for Infectolab. The procedure is really well explained on the papers that go with the test kit.
Results can be ready in about 9 days, you can receive it through email if you give them a call.

The lab is part of the Borreliose Center at Augsburg, but I heard good, but also bad experiences with that clinic.

I am with a very good doctor here in Belgium, the one Roxie is writing about. I have been under his care for 4,5 years. He is a very knowledgable doctor who is always studying and learning. He is an internist/cardiologist, but he is focussing on patients with CFS, ME, Lyme and other bacterial infections, as well as viral.
He is getting more and more patients though, so waiting times are about 1,5, maybe 2 months now. Which is not that bad. You can always ask the secretaries to put you on the waiting list in case someone cancels. They have a lot of patients coming from everywhere, they will plan everything so it is comfortable for you.

If you want more information, please send me an email, cause I can not reach you (your email address is not enabled). I will be glad to help you if you are interested in seeing this doctor. He is in Brussels. I don't know where you are, you could be close to Brussels, but also not...

Many of us have late stage Lyme Disease, if your wife gets treated she will get better. It is not an easy treatment, but hey, we have no choice, do we??

Tickledpink is almost healed with herbals
turn

My dr uses antibiotics and herbals.

Please contact me, I have the name of another dr in Germany who is very knowledgable.

MarieLS
Posted 7/13/2014 7:36 AM (GMT 0)
Dear all,

thanks for your comments so far, already a lot of time that I have not placed anything here.

My wife is now in a second round of three weeks with Doxycyclin 200 since Wed this week.

There is no positive change so far, maybe it is a herx reaction, but a herx reaction for already 3 weeks and more !

Biggest problems are whole time contineous very aching column, right hip very painful with pain going through whole right leg to the foot, but no numbness in leg so far, numbness only in fingers sometimes, in any case she has got a lot of symptoms of lyme arthritis with aching joints over whole body, in the head region contineously headache with tinnitus from time to time, ants running over the head, tongue and eyes with some problems, very painful neck. Horrible in general the constant fatigue and weariness !

What does me make afraid in addition to her symptoms is that she's very unresistant in general, with only 47 kg, having chronic Hashimoto, having chronic mononukleosis, having spine athrosis with hyperlordisis and last but not least : Our son is autist, you can imagine that my wife is constantly in a stress situation, but our son needs my wife for to go ahead ! Stress is poison on lyme, I learned.

We are not with a lyme specialist yet, as my family is also on vacation now, me working here.

I really think that my wife is already a late lyme patient !?
I already saw horrible things in the internet and as my wife is very unresistant with the other issues described above in addition I am afraid that she will spend a long time in special hospitals or in bed at home.
She is still able to walk, but I am very afraid that she's spending her life soon in wheelchair what she has to
learn to accept. The most horrible for me is when the disease is affecting the brain and she does not know who is her husband.

I am too negative here ? Do you see any chance for my wife ? How probable is it that she's a late lyme patient ? What is the percentage of late lyme patients in wheelchair or symptoms of Alzheimer ? 10 %, 20 % ?

Thanks for your great help here !

Manuel
Posted 7/13/2014 8:34 AM (GMT 0)
Hi Manuel,

What part of Germany do you live in?

I could help you to find specialist treatment if I knew where you are located.

3 WEEKS of doxy isn't going to be of any use at all,she needs a LLMD as soon as possible,she doesn't have to end up in a wheelchair if she gets the correct treatment.

Is she detoxing? (entgiftung) this is essential because she's got to get rid of the toxins which are being released due to die off.

Tickled
Posted 7/13/2014 8:52 AM (GMT 0)
Hello Manuel,

I really think that you need to get your wife to a proper Lyme Literate Doctor as soon as possible. From reading your wife's symptoms, it is possible that she also has co-infections as well as Lyme. A lot of her symptoms sound like Bartonella. Doxycycline at this late stage of the disease will not help much, especially if she has co-infections.

There is the BCA clinic in Augsburg, Germany that treat Lyme and co. However, after being there myself, I can honestly say that the doctors (LLMDs) in America are the best and this is where the real knowledge and expertise lies. I'm in the UK and know of many people who have gone to the USA to get treated and have got well.

I really think that rather than worrying about the disease at this stage and what may happen or not, you should focus on finding proper treatment for your wife. If you can afford it, I would suggest that you take her to America for treatment. I know of a lot of good doctors and places where she can be treated. If you need this information, then please send me an email.

I'm being treated by a USA LLMD after trying the 'so-called' LLMDs in the UK and Germany and I can see the enormous difference in their knowledge and treatment. There is no doubt in my mind that the best place to be treated for tick borne diseases is the USA.

If you would like to go to the BCA clinic in Augsburg, then the waiting list is very long, no new appointments until January I believe. But the trick is to ask for cancelled appointments, which are many and then your wife can see someone ASAP. They do not tell you about cancelled appointments and you have to ask them for it. This is what I did!

All the best and good luck!
Posted 7/13/2014 9:51 AM (GMT 0)
Hi together,

thanks for your statements.
We are living near and east of Dusseldorf, in the center of Germany.
Altogether my wife has recently started her second round of three weeks with Doxycyclin 200.
I learned now that in most cases Bartonella is a co-infection in Lyme. But I cannot see any specific symptom specially resulting from Bartonella. Yes, we do immediate help for her, but actually she is on vacation.
I guess that my wife is detoxing, therefore symptoms worse, I think, but I do not know how much is the time for a herx reaction. If she's already more than 3 weeks with ' herx reactions ', then I think it is more probable that she's in late lyme phase than in herx reactions
One symptom which I forgot to mention is that she's loosening a lot of hair, in whole flat there are hairs of her.
Posted 7/13/2014 10:02 AM (GMT 0)
Hi again,

I live in Limburg,Hessen :-)

What is she doing to detox,I mean is she taking baths or footbaths? dry skin brushing or taking probiotics?

Hair loss is very common amoung Lyme sufferers,I've experienced this myself but it does improve as the recovery process kicks in.
Posted 7/13/2014 10:32 AM (GMT 0)
Also Hi again,

then I misunderstood it, she's not doing anything else than taking the Doxycyclin !!!
And she is taking a lot of water what is good, I know that !
Posted 7/13/2014 12:55 PM (GMT 0)
Hi Manuel and welcome!

So sorry to read about your wife, you're a great husband to be so concerned.

I had horrible problems with my legs and could not walk for a very long time as well as so much pain in my legs. What I didn't know back then was that it was toxins that was causing all my problems. I have been all better for years now and no problems with my legs or walking (I do aerobic exercise, etc.)

As Tickled Pink wrote about detoxing, it's really important. Do you have a tub in your home so your wife can start taking detox baths every day? A detox bath is warm water mixed with Epsom Salts and Hydrogen Peroxide. These baths remove the toxins from the body. Instructions are in the sticky thread on top of this forum called "New to Lyme? Start Here!"

If you don't have a bathtub then your wife can do foot detox soaks.

Hope this helps,
Denise
Posted 7/13/2014 1:26 PM (GMT 0)
Dear Denise,

thanks for your comments !
I really did not know about those detox baths. At the moment my wife is out of Germany on vacation.
Sure, we've got a bathtub at house. We will try then after her long vacation, it is summer now.
I guess you were in a wheelchair for some months if you could not walk ? But now you are much more better !
What do you think ? My wife is already in late lyme stage ?
Manuel
Posted 7/13/2014 1:40 PM (GMT 0)
Hi again Manuel,

You are quite welcome! I wish I had known about detox baths when I was at my worse but I didn't know until years later when I joined a lyme forum (not this one) and so many people talked about detoxing. At first I thought detox baths were crazy and I thought what does these baths or detoxing have to do with lyme disease? It made no sense to me years ago, wow, live and learn!

I lived alone as my ex-husband was not supportive of my being sick so I refused to get a wheelchair but I did use crutches to get into my car when I had to go out. And yes, I had late stage lyme or as some call it "chronic lyme".

I am 100% better and have been for over 8 years now. I come back and post on this forum to help others as I could never forget what I went through. If I could help even one person that makes me feel really good.

I think if your wife started doing the detox baths as well as dry skin brushing using a natural fiber brush before getting into the bath, her legs and her overall health will most definitely improve!

Please remember that one bath won't accomplish much, they should be taken every day. In the beginning your wife may feel worse from the first few baths but then it just gets better!

I hope this helps,
Denise
Posted 7/13/2014 3:12 PM (GMT 0)
Dear Denise,

very nice by you when telling here that you feel happy and good when helping other people here !
Very good standpoint ! I would do the same !
And you are nearly OK now after several years with trouble, seems to be that way ! Congratulations
My wife has still to battle, I will be with her, but I hope that we can avoid severe symptoms and consequences !
Thanks for your help
Posted 7/15/2014 9:44 PM (GMT 0)
Dear all again,

please tell us how long the Herxheimer reaction does exist ?
My wife is now 4 weeks with Doxycyclin 200 mg and the symptoms are not going away, on Sunday
she was vomiting for the first time.
Should she ask for another medicine ?
Is it very probable that she's already chronic late Lyme when after 4 weeks symptoms are staying the same way with no improvement ?
She's now on vacation, but which antibiotic is recommendable ?
I am also confused whether there are also co-infections ?
Posted 8/4/2014 10:58 PM (GMT 0)
Dear all,

my wife terminated now 6 weeks with Doxycyclin 200 mg on last Monday already and unfortunately there is no real improvement or progress. Most symptoms staying in same form like weeks ago and we already did now a six weeks antibiosis. Fatigue, headache, tinnitus, primarily lyme arthritis symptoms ( whole spine, right hip, fingers at both hands, shoulder and neck ), some symptoms constantly, others with typical episodes of late lyme stage. Not sure, but skin seems to get thinner at her legs. But no paralysis so far. As my wife is very immunocompromised, very thin and with light body you already know that I am especially afraid of late lyme stage forms with paralysis as this would signify a psychological downfall for my wife as she also modeled in former times and with the already existing symptoms she's suffering too much. When searching in the web mostly late lyme patients with asthenic are sitting in wheelchair. I know we do need a specialist ASAP. But actually it is vacation time still here. We do need a new blood testing, the anaylsis for co-infections, etc.. But do you agree that my wife is already in late lyme stage
Manuel
Posted 8/5/2014 5:58 AM (GMT 0)
Manuel - You are a very devoted, caring husband...and she is fortunate to have your support.
Please focus on getting her treatment and not worrying about what stage of lyme disease she is at. At this point she is not in a wheelchair.
Have you found a Lyme Literate Doctor that she can see? It is very important she sees someone who is knowledgeable and experienced in treating lyme disease.
There are many people who have had lyme disease for many years and with adequate treatment have healed. Even people in wheelchairs.

The sooner she gets treated, the sooner she can start to get better.
Posted 8/5/2014 8:31 AM (GMT 0)
Manuel123,

I am living in Canada but I recently heard about a treatment in Cham Germany that I might consider doing. I have heard good things about this treatment:

https://www.google.ca/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CB8QFjAA&url=http%3A%2F%2Fwww.gesundheitspark-cham.de%2F&ei=5pXgU8mXL9CuyAT66oGYAg&usg=AFQjCNGAK3GBryXj61OqXzCToXFAXQx6Lw&bvm=bv.72197243,d.aWw


Others have said it already, but I would like to repeat, detoxing is an essential part of healing! It has helped me so much. Good luck with everything.
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