(no subject)

Ik heb al een tijde niet meer gepost, maar ik ben nog wel bezig geweest.
Zoals het er nu voorstaat heb ik met de schildklierhormoontheapie al zon 40-50% verbetering gehad dat is meer dan de meeste fobromyalgie en ME patienten. Ik zoek dus ook lekker zelf verder.

zoals het er nu voorstaat zijn er 3 zinnige methodes waar ik ook heil in zie om mijn klachten ermee te behandelen

de achterliggende theorien bij deze behandelmethoden, hoewel verschillend in hun verhaal kloppen allemaal goed met elkaar, dwz dat het ene het ander niet uitsluit maar eerder aanvult, alledrie behandelen ze weer een stukje van de gevonden afwijkingen in ME en fibromyalgie

Binnenkort ga ik naar dr de meirleir in belgie voor het tweede deel van mijn behandeling.

Daarna ga ik de methode van dr teitelbaum proberen een deel daarvan (ijzer voorschrijven) heeft in ieder geval al 2x geholpen

en eventueel in de toekomst nog kb-141

Wat doen ze
Dr Lowe ; schildklierhomronen, gezond dieet, training, voeding

Dr teitelbaum ; mitochrondria oppompen 125/mnd

Dr De Meirleir ; acclydine om je groeihormoon op te pompen kosten : 1600

DRLOWE: www.drlowe.com

MEIRLER: http://blog.seniorennet.be/jules/archief.php?ID=104

DE TEITELBAUM http://www.betterhealthinternational.com/lib_mamfib.asp (staat een deel over zijn behandeling)

KB - 141 http://www.thyroid.org.au/Information/KB141.html

nieuwe update september

Ik heb hier niet veel geupdate, wel in mijn gewone dagboek. Ik zal hier de belangrijke posts neerzetten ze zijn helaas wel in het engels:

(van oud naar nieuw):

12 september 2005
Lately I havent been updating too much. As you might have guessed thing aren't going to well, both healthwise and mentally. As most of the readers of this livejournal probably know I suffer from disease of which the cause isn't precisely know. Its a form of hypothyroidism, but not a common one. I have problems with the uptake of thyroid hormone, and hypothroid complaints. Since two years I am on a high dose of thyroid hormones, of which I hoped it would make me healthy again, and it did improve my complaints, I am still far from healthy. I'm still too ill to work, go to school or to even walk everyday outside.
The last half year it has been impossible to increase my dose of thyroid hormones even more because of medical reasons so I'm not improving anymore healthwise.

Doing thinks simple things as going to friends or going to the supermarket still are most I can do on a day. Doing too much on a day increases my complains for several days, resulting in increased pain, fatigue, confusion and panic attacks.

Knowing I'm not going to get much better, lately I've a lot of power to fight against them everyday. I've been spending more and more time at home, avoiding to go out a lot. For several years I've been missing to see people on a kind of daily basis, but going out to do so simply isn't possible.

I'm not depressed in the way that I dont want things anymore, because I would love to go to school, work and go out. I'm just sad because of missing this, and not beeing able to work on my future.
I am desperate of what to do know, and have decided to go to a psychiatrist in the hope they are able to solve at least my thyroid-related depression, confusion and panic attacts, and know some ways to be able to build some kind of life, even though I'm ill.

The psychiatrist I went to was very nice, thank god, and she took things I said seriously. She things I very much need help, but because a lot of my mental complaints have medical reasons she is going to refer me to a specalist center. I will hear from her soon again, and I'm seeing her thursday again.

I'm still not really used to beeing taken seriously about beeing ill, but its a big relieve. A big thanks to Dr Lowe, Dr linschoten and dr Pop . I am still a bit shaky about thursday, but very happy I finally get help.

16 september 2005
Today i have been with the psychiatrist. I was a big domper. As much as she was convinced last time the base of my problems were fysical, and I was unhappy because of not beeing able to do anything, after a talk with Dr Pop she started to talk about 'taking less medicines' and psychotherapy and ignored the whole thyroid resistantce part causeing mental problems too. I think something went really bad in communication. She started to talk about 'personality problems' and perhaps even uptaking me in a center.
I think she was really trying to help me, but I dont see much help anymore in her therapy the way she has replanned it after the phonecall. Psychotherapy cant solve fysical problems. It reminds me a bit of what happened a few years ago, when I was a lot more ill and not on thyroid hormones yet.

Several years ago, before I had thyroid medication at all I went to the 'Jan van breemen instituut' for the same complaints, but then a lot worse. (Its an institute te help people who have been diagnosed as having fibromyalgia, which means they have reumatic problems with an unknows cause.)
When I came there the first time amongst other things they started to talk about fibromyalgia beeing caused by mental probems from too much stress and trauma and patients needing psychotherapy. (which in my case is not possible since my health problems (in a less bad form) already existed already at the age of 5, and I have not had any trauma or stress at that age)
I told them about my then undiagnosed complaints and my suspection that they were thyroid related, because there were several more memebers of my family had the same problems and the same problems with diagnosis because they had normal bloodvalues. They simply told me it was impossible 'some people with firbromyalgia just have weird hormone levels and that should not be treated' and I needed psychoterapie and had mental problems and those made me ill.

I have left the JVB institue because I was convinced things do were thyroid related, both my fysical problems and my mental problems. Thank god I did, because on the thyroid hormones my health did improve a big lot, I had some 40-60% health improve, which is more than I have ever had on any treatment (see http://fibrohypo.cjb.net for the whole story)

Both my mental and fysical complaints improve on thyroid hormone, the higher the dose, the less complaints I have, if it would be possible to increase my dose till 8, 9 grains of thyroidum I probably would be healthy. The reason I cannot increase my dose anymore is because my heartrate increases too much above a dose of 5,5 grain, would I be able to find a way around that the problem would be solved.

Since solving the problems is not possible with normal thyroid hormones because of my heartrate, I will need to find a way around that to releave the rest of my complaints.

I would preferable have medicines which do not increase my heart rate but do mimmic the thyroid hormone effect in the parts of my body that are still hypothroid. Some antidepressants mimmic the effect up thyroid hormal T3 in your head - so they would simple restore the lack of thyroid hormones there.

Now I suspect the same is going on as before

Just like in the fibromyalgia center this therapist too believes the 'in your head theory' again and for the second time I believe in my case they are making a mistake.

I have talked it over with my dad an brother, and they dont think psychothearpy the way she proposed is going to help either.
All the people who have seen how ill I am over the last few years have seen the improvement on medicines both mentally and fysically. People who know me well are all convinced I am ill, and that it is not a 'in your head' problem, but its so hard to convince doctors of that.

There are two things I would want from a psychiatrist:
* helping me wearning to deal with beeing ill and how to deal with the unhappyness of beeing able to do so little
* solvind the thyroid caused mental problems with medicines

So i will go talk with her again when shes back from vacation


18 september 2005
While is was reading some more info at the webpage of Dr Lowe (www.drlowe.com its about my disease) I stumbled on this article: http://www.drlowe.com/emailnewsletter/2003archive.htm#Contribution%20to%20the%20Field

This article is about a paper published in he world's most prestigious journal on theoretical medical science: Medical Hypotheses

Several weeks ago (months?) Mathilde had send it to me. Because it was published a while ago, I assumed it was an old article and since it wasn't published on Dr Lowes site I assumed its value had been proven to be wrong (since dr lowes site is up to date about his research)

I am so happy it is mentioned on the site. For a while I've been busy on a letter to Dr Lowe, maybe its a good idea to ask him about the article too

I so much hope on of the theories in it will be proven right, and more research is beeing done
The article:
"A metabolic basis for fibromyalgia and its related disorders: the possible role of resistance to thyroid hormone"

(no subject)

weer wat beter, sinds het heter weer is is mijn humeur beter, mijn slaap beter en mijn hartslag weer hoger. Iets omlaag dus.
Voor de rest niet zoveel nieuws, ik train weer met wat zwaardere gewichten en het kabbelt een beetje voort steeds ietsje beter.
Mijn liefdesleven is nog steeds 0,0% and mijn hormonen gaan wat op een neer
ik ben echt 100x beter dan voor mijn medicijnen maar het mag wel ietsje sneller verbeteren

meer info http://www.xs4all.nl/~fredb/
(dit is mijn gewone homepage)

(no subject)

het gaat een stuk beter maar mijn hartslag is wederom te hoog. weer wat verlagen dus. ik slaap regelmatig onder slaappillen wat wel waardig gaat. ik slaap wel steeds heel laat in. zonder wordt ik uitgeruster en minder moe wakker maar ik wil er gewoon vanaf.

(no subject)

ik heb een tijdje niet gepost. het gaat wel beter
ik heb vorige week de tryreoidum opgehoogd naar 6.5 grain en de thyrax doe ik nu omlaag
ik heb geen spierpijn, minder stijve spieren en ik slaap nu regelmatig zonder slaappil. het is echt raar, elke keer dat mijn pillen hoger zijn krijg ik savonds slaap. ik begin om 10 uur soms al te knikkebollen. Ik heb ook nog slechte nachten als ik overdag teveel doe maar het gaat iig wel vooruit


na een hele slechte week begin ik steeds meer op te knappen :D
meer goed nieuws... ik heb nu al 2x zonder slaappil geslapen! Ik doe het om de dag, als ik niet gelopen heb. Vannacht wordt poging 3. Ik wil wat vroeger naar bed dus ik heb geen idee of het gaat lukken. Voorlopig stop ik nog op een 'if possible' basis. Als ik een flink stuk loop heb ik teveel last om te slapen dus als ik naar vrienden ga zal dat wel helemaal erg zijn.Ik heb geen zin om mn sociale leven weer te moeten opgeven om een paar weken eerder van de slaappillen af te komen. Dus rustig aan beginnen. De rustig aan methode lijkt tot nu toe met alles het beste te werken.
Met mn gewichten gebruik ik nu de 3.5kg van mn broer. Ik kan er 2x 15 keer mee opliften (liggend) en de derde keer doe ik het met beide handen met eentje. Ook de andere oefeningen doe ik met de 3.5, steeds 2x vol en 1x half. Bij 3x vol worden mn armen te stijf heb ik gemerkt. (dit is behoorlijk veel als je weet dat ik met 5x liften met een videoband per arm ben begonnen, meer ging niet in het begin)
Het lopen doe ik in stukjes. Zolang ik me er beter van voel ipv slechter is het goed, liever iets te weinig dan teveel (wat klinkt dat erg! haha). Teveel merk ik pas naderhand, dan wodrt ik stijf, mn spieren heel koud en heb ik tintelingen/pijn. Als ik na een uur weer fit genoeg ben iets erna te doen is het oke.
Ik ga moregen weer, het lijkt weer opwaards te gaan. Oh en morgen ff mn hartslag sochtends meten!