posted
I'm taking tirosint and getting very fat. My face constantly has acne. I've tried synthroid but started losing muscle although I'm not sure that's related.
I've tested really positive for fl1953 and nothing else.
Any suggestions on alternate thyroid meds?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
2young -
Please see the thread above where Pocono Lyme had a similar question.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Are you on the low fat vegan diet?
Have you tried LDN to stop the auto immune thyroid attack?
Have you been tested for the methy cycle mutations and/or started the simplified protocol?
Have you tried stromectol/ivermectin to beat down the protomyxzoa? Are you taking lumbrokinase/bolouke to help with the biofilm?
The CBS mutation is just one that causes thyroid disfunction. The methyl cycle is extremely complicated. 80% of chronically ill patients have at least one CBS mutation. You need to eliminate food with sulfur and animal protein. The CBS is the first door you need to open so you can't ignore it. You can get urine test strips to check you sulfate levels but it will take months to get this under control.
Everyone in my family was tested and we all take the same basic supplements so this is a good place to start. Take one or two neurological health formula multi vitamins twice a day. Other vitamins have chemical ingredients that interfere with what you need.
Take several drops of hydroxy B12 twice a day, folinic acid twice a day, phosphytidylserene twice a day and 5-10 drops molybdenum. If you feel wired, anxious, depressed etc. take GABA. In winter take D3.
Do not eat fortified food or you will get such things as folic acid which will interfere with your ability to use the folinic acid you are supplementing. Eat whole foods, preferably organic - cook from scratch.
You can buy Naltrexone from River Pharmacy and it is very cheap but it does take a long time to arrive as it can get held up in customs. One naltrexone tablet is 50 mg. You can mix it yourself to create Low Dose Naltrexone. Just crush the tablet and add enough bottled water to make the dose you want.
You can buy what you need from Kmart to measure everything. Here is an example> crush the tablet with the back of a spoon. Add 50 ml of bottled water. One ml will equal 1 mg of LDN. Keep it refrigerated and shake well before each use.
You can buy a dropper that measure out ml. 0.5 ml would be equal to 0.5mg of LDN and this is a good place to start your dose. Build up slowly to 3-4 mg.
The only side effect you should get from LDN is sleep disturbance when you first start but you can avoid this by taking it in the morning. You may have vivid dreams or feel more tired when you first begin it.
If you experience any other unusual symptoms the LDN is stimulating your immune system which is attacking an infection. It would be a good idea to be on something else for that infection. As you have protomyxzoa, Stomectol is very powerful and effective.
You cannot take these things and expect to get better if you are not strictly following the low fat vegan diet. That means 15 grams of fat a day - and you count the fat in everything! You also want to avoid magnesium and arginine. You can find out how much fat is in the food you eat by going to http://nutritiondata.self.com/
I have gotten MUCH better following this program. I am very close to well - maybe as well as I will ever be.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
PS. I was on thyroid medication for over a decade. I had nodules on my thyroid. Last winter I had a flare and my temperature was nearly 100 degrees every day for over a month. I was eating constantly and lost 10 pounds.
Normally my thyroid was low. All of my life my normal body temperature was between 96.8 and 97 degrees. I felt tired, I had trouble with acne, irregular periods etc.
When I posted about what was happening, someone on this forum suggested I might have Hashimoto's disease and that is when I realized I had been told by one doctor that I have antibodies against my thyroid. Everything fell into place and made sense for the first time. I had previously had these thyroid flares but they were dismissed by doctors.
I started the LDN and when I got up to 3 mg all of my symptoms went away. I quit taking armor because I did not want to add to the problem. I never took it again. My body temperature is now normal, around 98.6 - for the first time ever! I feel better, have more energy - even think better.
LDN is a life saver. It will boost your regulatory T cells 300%. These are the cells that call off auto immune attacks. I also discovered I had polycystic ovary syndrome, when my daughter was diagnosed. This is often accompanied by Hashimoto's disease and the two are related to insulin resistance.
There was a study done at Georgetown University on type two diabetics. A vegan diet greatly reduced their need for medication and in many instances reversed the disease. Type 2 diabetes begins with insulin resistance.
The CBS mutation is connected to all of the above. In addition, I have mutations causing hypercoagulation and loading of iron. There is a reason we get sick. You have to find it and treat it - get to the cause.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Neff, you post the best stuff! Where did you get the cbs mutations test from (which lab/company)?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
I go to the FL1 953 dr... and he has had me on Armour from time to time.
Armour has both T3 and T4. I also have been on Ioderal.
I had to take my temp every morning before getting out of bed. I did this for months and months.
Yes, with me, it does/did screw up my thyroid.
If you can find someone that would give you a natural type it would be best.
Still wish you could get to AZ and get treated by him.... He is studying right now how FL1953 triggers our bodies either towards ALS or MS, autoimmune.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
posted
Nefferdun thanks for the info. I'll show your post to my llmd, he's very knowledgable and I wouldn't be surprised if he hasn't tested me for many of these things already. Is Naltrexone available via precription in the US?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
| IP: Logged |
posted
I get Lo-dose Naltrexone from a compounding pharmacy in NYC - Gideon Drugs. 4.5mg capsules, cost about $60.00 for 3 mos. supply. Your LLMD should contact them.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I get my LDN from my local compounding pharmacy. My dose is 3mg, $30 for the month.
Neff - thanks again for your insightful posts. I'm tangled with this stuff. Definitely have issues (I am homozygous for MTHFR) but don't know all of the other mutations, etc. I have sulphur issues but my docs don't seem to know how to address. I see this as a big stumbling block. Can't seem to navigate my way through it.
Where did you have your testing done, and at what cost?
Also, which urine test strips do you use?
2young - My best to you. Sending healing thoughts your way.
Thanks.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic