My short Lyme story by Litana, from France

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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Litana
Posts: 12
Joined: Thu 14 Aug 2014 22:47
Location: Paris France

My short Lyme story by Litana, from France

Post by Litana » Wed 17 Sep 2014 18:44

Hi. I'm a newbie here. ;)

I'm in France and i want read the forum.

I entered into the confusing world of LD last November when a doctor listen to me. I don't got a positive IGm or IGg on Elisa or Westernblot test.

I am ill since my teenager age.

Have a good day
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Chronimed / Puzzle des maladies chroniques

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: My short Lyme story by Litana, from France

Post by velvetmagnetta » Thu 18 Sep 2014 7:43

Hi Litana!

Welcome to the forum. Glad you're here, but sorry you have to deal with this miserable disease.

There are a lot of really kind, well-informed, intelligent, and open-minded people on this forum. That's why I love it here!

Maybe you could list some of the symptoms you've been dealing with and how long you've had to endure them?

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Litana
Posts: 12
Joined: Thu 14 Aug 2014 22:47
Location: Paris France

Re: My short Lyme story by Litana, from France

Post by Litana » Thu 18 Sep 2014 21:35

velvetmagnetta wrote:Maybe you could list some of the symptoms you've been dealing with and how long you've had to endure them?
I would like to list some of the symptoms but it's hard to translate from french.
I use Google Translate. I don't know if it's good.

difficulty concentrating (brain fog), saturation
slowing of ideation
memory disorders
Fatigue (tiredness = 3)
Needs a nap
Tiredness (post prandial)
Clumsiness, tripping
Shift sleep 1 to 3 hours
Middle of the night awakenings
Unrefreshing sleep - get up tired
Search for words - bebayement
dissatisfaction exaggerated
Tears hyperemotivity
exaggerated anxiety
Lack energy, motivation, life force
generalized stiffness
Myalgia: straight leg
Myalgia: left leg
Myalgia: other back
Arthralgia: right knee
Arthralgia: right hip
Arthralgia: jaw
Arthralgia hand / right wrist
Arthralgia: other
Low belly pain / pelvis
Zones crack / blocked
tendinitis
Lumbago / right sciatic
Herpes, exit buttons
apthes + gum inflammation (lower right teeth)
Rhinitis (or throat irritation)
Démangaisons
bloating
Trouble transit
Dry eyes, eye irritation
Cramps at rest
Fascilation an eyelid / a Member
untimely contraction
Restless legs diurnal
Feeling of stuffiness
Acne, pimples (face, back)
Reduced healing (wound closure / mushroom)
bruising
Stars in their eyes
Alternating night sweats / nervousness
Dysesthesia of the extremities (ants)
Cold / nervousness ends
Fatigue (general and / or muscle) exaggerated effort
heavy legs
swollen glands
Headache
palpitations
Rashes face / body
Sensations lipothymiques positional
Heat Sensitivity
Sensitivity to light / glare
excessive sweating
Visual disturbances Blur
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Chronimed / Puzzle des maladies chroniques

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ChronicLyme19
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Location: NY, USA

Re: My short Lyme story by Litana, from France

Post by ChronicLyme19 » Fri 19 Sep 2014 0:51

Have they checked your immune system function? Have the checked you total, and sub-class IgMs and IgGs? Not the lyme test, but I mean overall. You may not test positive if your immune system is not working right.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: My short Lyme story by Litana, from France

Post by velvetmagnetta » Fri 19 Sep 2014 13:56

Bonjour Litana!

My heart goes out to you for having to suffer all those symptoms. I suffer many of the same ones. You don't even have the satisfaction of at least knowing for certain what you have!

ChronicLyme19 is very knowledgeable and experienced with treatments and tests. She gives very good advice. Do you have a doctor who will listen to you and help you even without a positive Lyme test?

I had many neurological symptoms of Lyme, and when I tested positive for it, I was given long-term antibiotics. These antibiotic made me even sicker than I was before! I think the Lyme bacteria is dead, but I still, 6 years later, am suffering from many cognitive difficulties and fatigue and pain (lots and lots of pain). Antibiotics can be dangerous for some of us.

Do you have an LLMD?

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ChronicLyme19
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Re: My short Lyme story by Litana, from France

Post by ChronicLyme19 » Fri 19 Sep 2014 14:16

Unfortunately, I'm over in the US so I won't be much help for LLMD contacts. You might try ILADS for a start, I'm not sure if this referral will work outside the US, but they are an international group:

http://ilads.org/ilads_media/physician-referral/

EIther way, if you are sick, you just have to keep looking for a doctor who will listen. Many of us went through tens of doctors before we found one who would listen and help us get better. Being chronically ill is a long road. There is some hope in that some of us have gotten much better when they figured out some of the factors that were making us ill and treated all of them.

My doctor's hypothesis, and I tend to agree to this type of thinking, is that if you become this ill, it's probably not just from one disease. Many of us got several bugs from the tick bites and other have underlying problems with our thyroid function, immune function or other body system that is preventing us from fighting off the illness. Even if you strongly suspect you have lyme, it's good to get other conditions ruled out because there is a chance you could have another condition(s) in addition to lyme. He says it's like having ten nails in your foot and you pull out one, and you still have 9 other nails.

I'm not an expert on the tests, but there really is not one good lyme test that is 100% specific or 100% sensitive. I would advise trying multiple ones as some people have more success with one type than another, or one lab than another. All of the test must be interpreted with the clinical symptoms for a complete picture. I'm sorry it's not so straight forward as a yes or no. Sometime negatives, aren't true negatives and sometimes yeses aren't true yeses.

People on this board are very helpful, but we won't be able to diagnose or cure you. We can just share our experiences and what has worked for us, and help you find things to ask your doctors.

I hope you have someone over there to help you figure things out in person. The world of tick borne diseases can be complicated.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: My short Lyme story by Litana, from France

Post by RitaA » Fri 19 Sep 2014 20:09

Welcome, Litana!

I am sorry that you have been experiencing so many health issues, but I'm glad you discovered this forum. Hopefully you will find the type of information and support that people with Lyme disease often need.

Although you are probably already aware of the following, I just wanted to point out other possible resources from France even though your English is VERY good. Translating medical terminology from one language to another can be difficult, but Google Translate certainly helps with most of it.

http://www.francelyme.fr
L'association France Lyme

Association de lutte contre les maladies vectorielles à tiques.
https://fr-fr.facebook.com/france.lyme

http://www.forumlyme.com/phpBB3/index.php
Forum Lyme Francophone

Media-tiques, portail francophone d'informations sur les maladies vectorielles à tiques • France Lyme

http://www.associationlymesansfrontieres.com/
Association Lyme Sans Frontières

Some of us developed thyroid and immune problems only after being infected with Lyme disease, and I do think that ChronicLyme19 has given you some very good advice about this and other things. It's VERY important for any doctor to consider more than one possible cause for your many symptoms. Some doctors are better at this than others, so finding a doctor (or team of medical professionals) who will work with you is key to getting better.

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Litana
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Joined: Thu 14 Aug 2014 22:47
Location: Paris France

Re: My short Lyme story by Litana, from France

Post by Litana » Sun 21 Sep 2014 15:57

velvetmagnetta, thank you! I'm glad to find a forum with a lot of information. :)
ChronicLyme19 wrote:Have they checked your immune system function?
Is it CD 57?
ChronicLyme19 wrote: Have the checked you total, and sub-class IgMs and IgGs? Not the lyme test, but I mean overall.
IgM and IgG are in the standard. IgA aren't in the standard.
velvetmagnetta wrote: Do you have a doctor who will listen to you and help you even without a positive Lyme test?
Yes i have a wonderful doctor who listen to me with a pain in my teeth/my jaw. After the first time, she want a test ELISA and Western Blot. Elisa was négative. Western blot was negative with 2 "bands" (is it the good term?) under the cut off (I don't know if it's clear?). My doctor say me "the test isn't essential, it's a indication, i'm most interest by clinical symptoms".
I was given antibiotics during two months, with 2 antibiotics (Fluconazole and azithromycine) in alternately. These antibiotics made me even sicker than I was before, too!!!! It was a hell. I had many arthralgia symptoms and fatigue. Colloidal silver help me for arthralgia symptoms and decreased pain.
After and now again, i have immune modulator ("modulateur de l'immunité") with immunoglobulin. The first time I took immunoglobulins, i made ​​a Herx with neurological symptoms. Now, the reaction is much weaker.
velvetmagnetta wrote:Do you have an LLMD?
My doctor is an LLMD who study with Dr Horowitz. He came in France in June 2014 for a congress on Lyme Disease with international specialists (Dr Sapi, for exemple).


In France, Elisa test is not fiable : 50%. It's not good... :bonk:
For Western blot, a lot of laboratories use american test to test only Borrelia burgdorferi. This hard to find a laboratory which use European bacterial strain. The German tests are the best.
In France, there is a failure to recognize chronic lyme disease. It's hard to find a LLMD. There are few physicians who listen patient with LD chronic. If not, "you are mad/crazy or depressive".... :bonk:

Before Dr Horowitz, american books on LD have not been translated in French. We use guidelines of Dr Burrascano, of Dr Petra Hopf Seidel (http://www.dr-hopf-seidel.de/). She is a German specialist on LD in Neurology and Psychiatry and in general practice. Also, we have a french doctors group specialist nammed Chronimed which work on "cold infection" around Professeur Luc Montagnier. Cold infection are infection caused by bacteria or viruses without fever (borrelia, mycobacteria, toxoplasmosis, herpes, mononucleosis, rickettsial,.... and many others ;).

Where is your list of abreviations?
We can just share our experiences and what has worked for us, and help you find things to ask your doctors.
I'm here to share that :)!
I want to read the forum to find information and support, to learn the latest scientific articles on LD, on Rife machine (Spooky2, http://www.spooky2.com) and many other things which i don't think now.

Where is the post on Rife machine, please?
your English is VERY good.
:D It's very hard to me. To write a few lines, it take a long time (and i use G translate to find the good word!)... Thank to you to write your words (redact), I take the same sentences as yours!

Thank you, Rita! I am registered on all your list of associations. I share a lot of information with other sick (?? patients). I participle on 3 french forums on LD, nearly 10 facebook groups... To learn always. :)

To get better, i don't eat gluten or milk or sugar. I eat essentially vegetables, fruits and white meat, for simplicity.

Glad to share, see you soon
PS : 1h30 to write this post :) yes! i do it! :woohoo:
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RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: My short Lyme story by Litana, from France

Post by RitaA » Sun 21 Sep 2014 19:54

Bonjour Litana!

Before I forget:

a) I just love Paris! I have only been to this lovely city twice, but I hope to visit again in the future. My younger brother and his family lived near Nantes for 3 years, but I wasn’t well enough to travel during that time, so I missed visiting another part of your country.

b) Your black cat looks almost identical to one of my two black cats who died about 5 years ago. I now have a grey Russian Blue cat who I adore and spoil.

As far as taking long to write posts, I often spend much more than an hour, despite one of my two first languages being English (the other is Finnish, which I also spoke daily until the age of 5). When I write letters or messages to family members in Finland, I depend on Google Translate a lot. Before that, I would spend days trying to write even a short letter – using a Finnish/English dictionary and my many “Teach Yourself Finnish” books. While my Finnish pronunciation is excellent and my vocabulary is good enough for Finns to understand what I'm saying, my grammar remains at the level of a 5 year old mostly because Finnish grammar is so difficult and requires lots of practice.

There isn’t a lot of information about Rife on this forum. Most members here do not believe there is any scientific basis for this alternative treatment, and therefore don’t use it, however there are a few exceptions to this. Here is one of them:

http://www.lymeneteurope.org/forum/view ... f=12&t=293

I’m happy to hear that you are making use of other resources in your own language. While growing up in Montreal, I studied French starting at age of 8, and I just love this language. I even worked primarily in French while living and working in Montreal -- until my husband and I moved to Toronto 31 years ago. Now I only speak French when visiting Montreal or Paris – which isn’t very often.

Yes, learning more about Lyme and other tick-borne diseases is what many of us are trying to do – even those of us who are much better (although not completely well) after treatment.

Take care,

Rita

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ChronicLyme19
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Re: My short Lyme story by Litana, from France

Post by ChronicLyme19 » Mon 22 Sep 2014 1:05

Were your IgG subclasses were normal as well, or did they just check the overall level? You can have total IgG normal, but be deficient in a subclass. I was deficient in all 4 subclasses and the total. My IgA was a little below normal as well. I take a subcutaneous version of IgG. I'm not sure if it has helped much with Lyme, but it has kept me from getting all the colds/flus in the winter. I don't seem to have strong herxes with antibiotics, but I think that's because I have a weak immune system. Others on here have strong herxes with antibiotics like you and feel much sicker with them. I also haven't been sick as many years as they have, so I suspect I have less bacteria built up in me.

I seem to only herx with herbs, but then as my body adjusts I feel better. For me, adding in a detoxification and liver support helped me feel better with the herx. Some people who feel better with alkalizing diets or alkaseltzer. I have no evidence to back this up, but I suspect it's because making your blood less favorable to lyme and so it stays dormant. Lyme seems to like acid and sugar from the videos I have seen.

Someone correct me if I'm wrong but I thought the CD 57 was a marked of inflammation.

I assume since you are from France that you are of European decent? Have you been checked for the MTHFR gene mutations? I started taking a different vitamin because I am homozygous for the C677T mutation. I started sleeping much better (more restorative, not quantity), even though my B12 vitamin level was normal before that.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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