I am in really bad shape and having someone post this for me.
What do you do when everything makes you worse?
For years treatment for tbds only made me worse. I was told it was fine and either I was herxing and I needed to hang in there or I needed to be more aggressive.
This is what I was told I needed to do to get better. I just wanted to get better so I listened to my dr and did everything I was supposed to.
Apparently I was developing other problems and having bad reactions to things � not herxing. By the time I realized this, my mcs progressed to the point where I can�t go to the hospital, facilities for testing, or most drs offices.
I am homebound, living with my mom, but isolated from family and friends due to the severity of my mcs.
I have to wear a mcs mask and bring a poratbale air purifier just to go to a dr who specializes in mcs and doesn�t allow perfumed products or scented cleaners in the building.
Everything I try to take makes me worse. Things that are normally benign make me worse. I stopped treating tbds. My body can not take it and I do not think it is the worst of my problems.
Finding out what problems have developed seems impossible when my access to medical care is so limited. I have next to no function left and a long list of bad symptoms.
A person can only get so much worse before their body gives out. I am so afraid I am going to die. I have been sick a total of 24 years but I have been disabled, and diagnosed with lyme and trying to get better for 11 years.
I know I often say I am an old lady and I am and have been in most ways buy not biologically. I have tried so hard to get better. At this point I just don�t know what to do to save myself if there is any saving me at this point.
My family is very close and they have watched me suffer and suffer a good portion of my life. If they knew how to help me and it was in their abilities they would.
Doing nothing doesn�t seem to help. doing something makes me worse. Whats left?
Any ideas thoughts experiences greatly appreciated.
Posted by missing (Member # 22437) on :
Hi, I was just going to post this same thing. Except I don't have any family willing to help.
My daughter and my husband are sick too!
So, you have been treating Lyme disease for many years?
Well, I think I am almost at 2 years.
I don't know what to do to help you.
I would say, why not try a different Lyme doctor?
I heard that there is a doctor that specializes in just the co-infections.
I will pray for you.I will ask my husband to pray for you.
I feel so sorry.
Why not write to a philanthropist, and maybe they could find treatments for you?
Posted by seibertneurolyme (Member # 6416) on :
I would start by reading the article below on highly sensitive patients.
Then I would call this doc to see if he can give you names of docs closer to your physical location.
I would also research using the phrase "highly sensitive patient." I know I saw another link to another doc in Chicago I think it was recently -- he was a Chinese doc who used the Asyra and other techniques and I think listed lyme as something he treated.
I have no connection to either of these docs -- just things I ran across that might help.
Bea Seibert
Posted by Jane2904 (Member # 15917) on :
Hi,
I am so sorry for all your suffering. I wish I knew of a way to help you.
Have you been able to have tests to see if you have Methylation, detox issues?
I do not understand the whole issue, but our daughter has a genetic defect in her Methylation cycle and I suspect other Methylation issues.
Our daughter does not tolerate antibiotics, they seem to make her herx terribly and no improvements. She also does not tolerate many supplements etc. Dr. has said this is related to Methylation.
So far, she is not able to tolerate treatment to correct these issues.
Have you ever tried Homeopathy? We are trying this for our daughter. I will let you know if it helps.
Posted by sk8ter (Member # 8671) on :
Contact Dr. Rea in Texas. He is and has been the top MCS dr in the country. His center is set up for MCS people and they have the only clinic with protocols to get you better. They have lodgings that were made for MCS patients to be able to see the dr and the clinic is made out of porcelain walls and no MCS materials. Here is their website. http://www.ehcd.com/
He has been the pioneer for MCS for over 40 years.
Posted by Emmee (Member # 29866) on :
What is MCS? It looks like sk8ter has a good contact for you. Homeopathics worked well for me but I had to take a boatload of different ones for all kinds of supportive issues. If I were you I would take one symptom at a time or one body system at a time and pray for wisdom in what will work and progress in that area. Everyone's body is unique and so it is difficult to know what will or will not work.
Posted by AZURE WISH (Member # 804) on :
missing - ive been sick 24 years treating 11 years. thank you for your prayers.
siebert - i will have family checkout the liks and try to do some googling
jane - i tried sulphur homepathy - my body reacts bad to all sulphur we were hoping to make my body stop reacting bad to it but i had a bad reaction to the sulphur homepathy and had to stop it. hope it helps your daughter. i think that ssomething had to be consumed for the methylation test. i remember disscussing something like that with my dr but he thought the consuming stuff was too risky with the way i react to stuff.
sk8ter - it does sound great but even if i could afford that kind of treatment, there is no way my body would make it to texas.
emmee- mcs multiple chemical senstivities
i do have a mcs dr who actually is lymeliterate. i am seeing him soon and was hoping to have ideas to talk to him about. I react bad to the treament they usually use on the senstive reactors mcs.
I am in so much pain and have such bad other symptoms it is just to hard to think to try to figure anything out.
thank you for all your ideas/thoughts/expereinces
Posted by Jane2904 (Member # 15917) on :
Hi Azure,
The test that my daughter had was a blood test. I am not sure if it was a complete panel.
It came back that she has a defect MTHFR, she does not process folic acid to its active form.
So she does not detox well. She did not consume anything prior to the blood test.
Good luck, I hope you gets some answers.
Posted by betty1939 (Member # 18240) on :
I have the genetic defect of MTHFR too. I read that it can cause stroke, heart disease, blood vessel issues, and neurological issues.
I didn't see a lot of information on treatment for it though. The rx that I am using currently is called neuropath, but it is so expensive because my insurance doesn't really cover it and the drug store has stopped selling the generic brand which costs only $64.00.
Jane2904 what is your daughter using for treatment?
Posted by Jane2904 (Member # 15917) on :
Betty, she has one copy. As far as I know, she does not have the one that causes stroke, etc.
She is supposed to take folate, but when we tried in the past for the Methylation Protocol; her throat would get tight.
She will be retrying in near future. It is called ActiFolate by Metagenics. We purchased it at her ND's office.
My understanding is you only take 1/4 tab or less.
Posted by karenl (Member # 17753) on :
Azure, had the same problem, parasite treatment helped and I am ok. Then the MTHFR is not a problem.
Posted by Robin123 (Member # 9197) on :
Azure, is there any way you could handle far infrared sauna sweating? My extremely severe MCS lessened after sweating once a week on a borrowed FIR biomat.
Now I will be continuing with a borrowed portable FIR tent, like 2x/week. Heating/sweating in the tent goes fairly quickly - like sweating in about 20 minutes, stay in another 10 or so, then shower off. If you could do this, you could detox.
Posted by AZURE WISH (Member # 804) on :
karenl - how do u treat the parasites when u cant take any herbs, can only eat less than 25 foods, and lots of prescriptions are also intolerable?
Robin - that sounds great but 1. anything new is off limits for me due to mcs and used is so risky.2. i am heat senstive. my dizziness is triggered and then i would have to worry about passing out. some of my other symptoms that i assume are nervous system related lightheadness nausea shortness of breath etc are also heat sensitive.