How can I help my friend with Lyme Disease

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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jpapadami
Posts: 2
Joined: Sun 24 Mar 2013 18:37

How can I help my friend with Lyme Disease

Post by jpapadami » Sun 24 Mar 2013 18:43

Hi All,

I have a friend that has been fighting lyme disease for some time now. I wanted to share her situation with all of you with hopes that someone can help me help her as her situation has become very dire. Here is a little history of what is happened up till now. All of this takes place in Bulgaria where she is from.

My friend got bit by a tick in 2002. In 2005, she started feeling very ill, 40 degrees Celsius temperature, frequent dizziness, and was throwing up constantly. For 4 years, doctors were constantly examining her trying to diagnose her and in 2009 the diagnosis was lyme disease (Borrelia burgdorferi).

From my understanding there are 2 levels of immunoglobulin that need to be measured while having lyme disease, IGm and IGg. She has been taking “Doxycycline”, “Vibramycin”, and “Ceflox” with double doses on at least 7 separate occasions (1 month per occasion). Her IGm level varied from 20 – 70 while on the medication. Now, her IGm level is 20, but must be under 20. Her IGg levels were from 12 – 13 (which is normal), but from her last examination her IGg level is 21. She is now becoming very worried that her IGg levels are too high and that it may now be a chronic condition for her with no possible cure.

She is 34 years old. She has been trying to cure herself for the past 8 years and has pretty much lost hope. All the doctors here in Bulgaria say that there is nothing else that they can do for her and that the antibiotics that she has been taking are the best and strongest to cure her. But unfortunately, all attempts have been unsuccessful. Have you heard of such a situation as hers and what else can be done to help her? Are there specialized doctors/hospitals in the EU that we can get a hold of, any other types of medicine or therapy that she can undergo, etc…

Any help, suggestions, opinions, and comments would GLADLY BE APPRECIATED as I am trying to use all channels open to me try and get help as there isn't much more that can be done for her in Bulgaria, or at least that is what the doctors are saying.

Regards,
Johnny

frustrated
Posts: 33
Joined: Tue 19 Mar 2013 20:07

Re: How can I help my friend with Lyme Disease

Post by frustrated » Sun 24 Mar 2013 22:37

From my understanding there are 2 levels of immunoglobulin that need to be measured while having lyme disease, IGm and IGg.
First off the tests are wildly inaccurate and therefore untrustworthy.
it may now be a chronic condition for her with no possible cure.
Generally the consensus seems to be that chronic lyme disease suffers will suffer for years/decades if not forever. I know 5 people personally with lyme (3 with positive test results) - none of them have ever been 'cured' - including myself. We all still suffer. You'll also find a million similar stories all over the web.
She is 34 years old. She has been trying to cure herself for the past 8 years and has pretty much lost hope. All the doctors here in Bulgaria say that there is nothing else that they can do for her and that the antibiotics that she has been taking are the best and strongest to cure her. But unfortunately, all attempts have been unsuccessful.
Have you heard of such a situation as hers and what else can be done to help her?
Yeap, almost on a daily basis. It's pretty common to see people with lyme suffer for a very very long time and not get adequate treatment. Even with adequate treatment some find relief - others do not.
Are there specialized doctors/hospitals in the EU that we can get a hold of, any other types of medicine or therapy that she can undergo, etc…
If it were me I would see a LLMD (Lyme Literate Medical Doctor) and get put on long term antibiotics. Besides that there isn't much else. Theres a lot of other stuff you could try like rife machines and HBOT but I'd argue and say they are junk. You can also try herbals/supplements/vitamins etc but again lot of junk and untested stuff to wade through.

edbo
Posts: 90
Joined: Sat 2 Feb 2013 21:48

Re: How can I help my friend with Lyme Disease

Post by edbo » Mon 25 Mar 2013 0:41

Hi Johnny,

I am sorry to hear about your friend's condition. Unfortunately, what your friend is going through is not unique. There are many people all over the world whose health spins out of control after a tick bite and doctors say they are at their wits' end. I am not a doctor, so please take everything I write with a grain of salt. But maybe these are a few ideas for your friend to look further:

-Antibody tests for lyme are not ideal to monitor success of therapy because antibody levels may stay high (especially the IGG) long after the bacteria has been eradicated, there is no definite test that proves if the bacteria has been eradicated
-There are theories that some lyme bacteria can persist despite antibiotic treatment, so re-treatment or longer duration of treatment might be necessary
-There are theories that lyme bacteria has mechanisms to escape treatment. Some people suggest using an antibiotic combination to eliminate all bacteria (e.g. take metronidazole or tinidazole to break up biofilm colonies).
-Intravenous antibiotics could be another approach if she hasn't already tried, they could be more effective to reach the central nervous system
-Another possibility could be that lyme is not really her problem anymore. Many ticks harbor other bacteria, viruses and parasites as well. Other widespread tick borne infections could be ehrlichia, babesia, bartonella, rickettsia, mycoplasma and many more which complicate treatment. Those might require different antibiotics than what is required for borrelia alone.
-Have her check for chlamydia pneumonia (CPN). It is an intracellular bacteria which becomes hard to eradicate. I know of a few people who thought they were treating for lyme, wondering why they didn't get better but then it was really CPN causing their problems. More info on http://www.cpnhelp.org. Doctors are decades behind with CPN diagnosis & treatment. People think it is a benign infection but in reality, it can be a serious and debilitating disease when it becomes chronic.
-Google for Burrascano's guidelines. He is a physician who treated patients with tick infections for many years. It could give you more pointers to look further.
-Finally, some of her symptoms could be caused by damages & autoimmune processes that are hard to reverse. But don't lose hope. My aunt was cured from lyme (without coinfections) after 10 years of suffering with 25 days of oral antibiotics and she is now pain free. Healing is possible if each individual's problems are identified and treated properly.

Again, this is no medical advice. I am just a lay patient trying to help to look further.

Please don't hesitate to come back and ask questions. There are many people here who are suffering from similar problems.

Good luck to your friend! I wish from the bottom of my heart that she will get better soon!

jpapadami
Posts: 2
Joined: Sun 24 Mar 2013 18:37

Re: How can I help my friend with Lyme Disease

Post by jpapadami » Thu 11 Apr 2013 12:22

Hi Edbo and Frustrated,

I appreciate the comments and suggestions that you took the time to state on the thread that I started. I would have replied a while ago, but have been tremendously busy at work. Nonetheless, what is more important that my friend was able to read the posts and suggestions. I know that the are not all that comforting to her for a cure, but they are realistic. What is also important is that she now knows that she is not alone and many people are in the same situation she is in and there are situations where people have been cured after fighting the disease for 10 years, which this is also hope for her.

I think that one of the things that is really bothering her is that the antibiotics that she has been constantly taking are affecting her organs especially her liver. Sometimes she feels that there is no hope and the disease will ultimately take over and be fatal. Are there such cases? How long can the human body last with such a disease? This is what I am most afraid of for her. What she is trying now is homeopathic remedies and I will encourage her to try herbal/supplements/vitamins, as well as your suggestions.

Once again, thanks for taking the time to reply.

Bagge
Posts: 596
Joined: Wed 19 Oct 2011 19:49

Re: How can I help my friend with Lyme Disease

Post by Bagge » Thu 11 Apr 2013 21:39

jpapadami wrote: What she is trying now is homeopathic remedies and I will encourage her to try herbal/supplements/vitamins, as well as your suggestions.
Homeopathic remedies do not effectively treat true medical conditions, including infectious diseases such as Lyme disease.
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