Chronic Lyme Disease Doctors?

9 posts in this topic

Hi all.

I know this is a controversial subject seeing how the medical field is divided, but for those who do have any kind of experience with chronical lyme disease I am asking for recommendations for Doctors.
A friend of mine got lyme a few years ago, and after a short treatment it was expected to be gone.
Now, a few years later, said person is suffering from extreme pain to the point that I am worried she won't be able to take it anymore.
She has been to several doctors, but because her body is so frail, it often ends up with the doctors hurting her by not being careful during checkup, and the following night she doesn't get any sleep because of the pain. And many doctor thinks it's psychosomatic now since they can't find what is wrong with her.
I don't know what to do, I want to help but I can't at this point.
She used to be a very active person and now she needs help carrying things, cooking, cleaning, anything that involves movement with the joints hurt her. Some days she is feeling better and then she wants to clean on her own etc even if it potentially could hurt her.


She got another blood test which came back "negative" but as I've understood it isn't reliable and her immune system is very bad now to begin with. Now the doctor has to respect the test results, the lab people say if it's neg it's neg when the doctor asked if there was anything else to do.
The doctor really wants to help her but he can't do anything more for her now that the test results were negative and it seems the Kasse won't pay for any other test.

 

I am trying to see if anyone has had previous experience with this and knows what to do? Is the only possibility private doctors? And if so, is it going to cost a fortune?

 

I am also worried she'll end up paying a fortune for a quack doctor, I know there are people out there trying to make money out of people's desperation and it makes me sick, and this being a controversial disease to begin with, it's like you don't have the luxury to be picky.

I do believe chronic lyme disease is a thing, but that doesn't mean any treatment is legit, so I am looking for some good advice but not so much "detox cures" or "color theraphy".

 

Sorry about the message if it made little sense, I'm feeling rather helpless right now.

 

Thank you.

0

Share this post


Link to post
Share on other sites

Pain is a very subjective experience, and since it's very subjective experience it can be controlled with the brain itself as long as the mechanism that is injuring your body has been removed and all that's left is pain in the chronic form.

 

Give her the book  "The brain that changes itself", it talks about Neuroplasticity and how through our thoughts, what we vision in our heads we can rewire the neurons in the brain that create pain and replace them with other type of neurons to eliminate chronic pain.

 

it's not quackery 

 

It's perhaps the biggest finding in the last decade.  (Our brain is plastic) and this form of therapy is being used worldwide now with huge success.

 

http://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7

Read how one of the scientist who found out our brain can eliminate pain eliminated his own pain and his patients' pain by rewiring his own brain with his thoughts.

 

And one last thing, tell her to avoid support groups on the internet and all that stuff, the net is FILLED with hypochondriacs and people who will quickly diagnose you with cancer over one sentence you write describing how you feel!!!  Everytime you go to a support group on the net it's filled with nagging middle age women with 20 SELF-diagnosis, all of them rare, neurological and all you hear is depressing stuff.

 

In order to ameliorate pain, it's important to stay active and remove yourself from stimulus that makes the brain remember you're in chronic pain.  (Support groups)

 

I don't know of any doctors, but I do know about neuroplasticity because that is how my loved one's chronic migraines disappear.

 

And yes, the psychosomatic contributes to pain.  (it's not the only cause but it adds as a cause)

 

 

 

 

0

Share this post


Link to post
Share on other sites

Psychosomatic doesn't mean she is not feeling real pain nor that it's not a real condition with biochemical causes in the body. If she is unlucky enough to be dealing with chronic pain syndrome there are a number of treatments which are successful but it varies greatly depending on the individual.

Here's some background from Medscape if it helps your understanding. It does mention Lyme disease as being one musculoskeletal that can cause chronic pain.

http://emedicine.medscape.com/article/310834-overview

 

I can't recommend a doctor but keep seeing specialists until one is willing to follow up as a multidisciplinary approach is best. This will of course take months, so in the short term keep doing anything that helps whether it be physical or mental therapy, hired help, painkillers and melatonin to help with sleep. Whatever symptom is the worst, try and get treatment for that to start with so she can have a more normal day to day.

 

0

Share this post


Link to post
Share on other sites

Lyme, especially if chronic, doesn't go away with short treatment antibiotics, and it severely damages the nervous system. It can also come out negative from standard tests but be positive in more specific tests like Elispot. I can recommend a doctor who does tests (only one in Europe), and I can offer a list of doctors in Germany but unfortunately not in Berlin.

As I am looking for one myself (possible chronic Lyme), please stay in touch. It's nice that you worry about your friend, if she suffers so much please please don't fall into the trap of believing doctors who just need a quick explanation for something that they don't understand. 

 

In case it's not Lyme (I hope it is, because for that at least you have therapies), it can be Fybromialgia, if it is accompanied by great weakness it can be ME (myalgic encephalomielitis), it can also be something else, please tell her not to give up trying to find the cause. 

 

In fact detoxification is at the basis of all alternative therapies, this is a really extensive protocol that explains the role detoxification plays - (german doctor by the way, who lives in the US, I am looking for students of his here) 

 

http://www.klinghardtacademy.com/images/stories/Lyme_Disease/klinghardt_biological_treatment_of_lyme_disease_protocol.pdf

 

healing from Lyme and other beasties or complex neuro-immune conditions like ME is a long path and takes full commitment. It takes even more strength because "normal" doctors ignore you and minimise your suffering. 

The possibility that one is a psychiatric case who destroys one's own life by imagining really precise symptoms that follow regular patterns is really minimal 

 

1

Share this post


Link to post
Share on other sites

Hi Bricks,

Your friend could try this to help relieve her symptoms

http://www.amazon.com/Lypo-Spheric-Vitamin-Bioavailability-Professionally-Phospholipids/dp/B000CD9XGC/

 

I, and my family, use the above product and can vouch at the effectiveness.

 

You will be surprised at how much Vitamin C can help with her condition - read the 1000+ reviews on the product.

She could also try vitamin B3 (Niacin) to help with her psychosomatic symptoms - here's some detailed information on Niacin

http://www.amazon.com/Niacin-Story-Wonderful-Healing-Properties/dp/1591202752/

 

Here is a website that maybe of interest to you: http://www.doctoryourself.com/

 

 

0

Share this post


Link to post
Share on other sites

I’ve just come back from my doctor who is quite convinced that I have Lyme disease.  I had a blood test a few weeks ago that came back negative, but the laboratory recommended that I have the test again in 2/3 weeks as the first test is not always definitive.

I have pains just now in my shoulders, wrists and thumb joints, but only in the evenings and only in one area each evening.  The pain is really bad, but only in the one area, I can’t imagine what it must be like to have this pain all over – it’s horrible.

My second blood tests should be back on Thursday, what happens then I really don’t know.  My doctor has given me some pain medication which I hope will help, I’m so glad he’s taking this as seriously as he is.

0

Share this post


Link to post
Share on other sites

I also have chronic Lymes disease. My hausartz didn't diagnose it for 2 years, telling me I was "depressed" or that "I should expect to feel like this at my age (60)", but finally, after a lot of nagging, he sent to to a skin doctor, who sent me to a skin hospital 160km away. They gave me 3 weeks of antibiotics which didn't work. So now I am back to the beginning, fighting with various doctors to get the treatment I need.

Unfortunately my hausartz doesn't believe in chronic Lymes and the skin doctor has a 6 week waiting list for a consultation.

I feel for anyone who has this, it is awful; the pain and the fatigue and the general not wanting to be here anymore! I am a bit(!) angry with the treatment I have had. The only doctor I have found online is St Georg Klinik in Bad Aibling which is 630km away and reading their online treatment bumf it sounds a bit "new age".

If anyone had anymore information I would love to hear from them (I live in Rheinland Pfalz).

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now