Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Any tips while in Torrance, CA?

Discussion in 'ME/CFS Doctors' started by Sinclair, Nov 6, 2014.

  1. Sinclair

    Sinclair Senior Member

    Messages:
    129
    Likes:
    41
    I am looking for cost-effective solutions for lodging, real food and transportation when visiting Dr. Chia's clinic and getting tested at Labcorp, in Torrance.

    I have an appointment for December. I have been hesitating, but I think I must put all my efforts on it.

    I am coming from abroad. If I cannot arrange my visit this time I think my best bet is to get in touch with the clinic with my medical record and a new appointment for 6 months later.

    Any tips are much appreciated.
     
  2. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    I saw Dr. Chia last April. Unfortunately, the equilibrant didn't do anything for me. I live about 2 hours from his office so I drove each way. The equilibrant was the only thing he had to offer me, apart from the testing.

    I'd suggest you contact his office and ask what they recommend in terms of lodging etc. They would obviously be familiar with the area. It's southern California and all of southern California is pricey, but Torrance is not as bad some areas.

    I looked at your supplements. I have a couple of suggestions, and if you've already researched all of this, please feel free to ignore them!

    Potassium sulfate - is this an oral supplement or injection? I found my energy picked up when I started taking potassium daily - I take 400 mg. of potassium gluconate. So I'm wondering why you're only taking potassium twice a week, unless it's an injection?

    Magnesium glycinate or citrate may be better absorbed than the magnesium oxide. I do well with the glycinate form.

    Almost all of us need B12 but I don't see it on your list. Also, folate in the form of methylfolate (not folic acid) has made a big difference for many of us. If you check out Freddd's posts on his B12 protocol, if you haven't already done so, this might be helpful. The folate helped my energy a lot (although it didn't stop my crashing), but I felt better in-between crashing. Also, B6 in the form of P-5-P has helped my energy too.

    And, a little over a week ago I stumbled across some very interesting information re branch chain amino acids. It's a long story, I'm getting some amino acid testing done, but these might help your energy. Here are a couple of links:
    http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341
    http://www.ncf-net.org/forum/Fword.htm

    4-1/2 years ago testing showed my leucine was very low, and tryptophan at the top of the normal range, but I did not understand its significance at the time and I don't think my doctor did either. But it's the first explanation I've seen for the phenomenon of crashing (PEM), with something you can actually do about it. I started the BCAAs (with glutamine), my energy did pick up, but I stopped it because I'm getting an amino acid profile test done and wanted to see what my levels are without the added BCAAs. I'm doing a lab experiment on myself and when I know the results for sure will post here, but so far these are the most promising things I've seen.

    I'm not trying to discourage you from seeing Dr. Chia but it is a long way for you to come and so you might look into these things.

    Best of luck

    Mary
     
    maryb and Sinclair like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Messages:
    958
    Likes:
    3,956
    My son is getting very good results with Dr. Chia's treatment and I would encourage you to give it a try. He does have other medications that he uses depending on your progress with Equilibrant. Those recommendations come after you stick with it for a while.

    We were advised by his office to get the blood work done 2 weeks before the appointment, as without the lab results he would be unable to evaluate and advise. You might check with his office about that as you may need to come early and wait around while your lab samples are being processed.

    I would recommend using google's hotel rate comparison guide here: https://www.google.com/hotels/?gl=U...otel;d=2014-12-01;n=14;usd=1;si=1cf63376;av=r
    I just put in some phony dates to get results. Torrance isn't exactly a tourist destination, and the prices reflect that. If I were in your shoes I would look for a hotel with a kitchenette and a free shuttle service willing to take you around town and to the grocery store to shop for real food.

    If you have the money and energy I think there are better areas to stay in to get the tourist experience. Sightseeing would require a car.

    I have heard a lot lately about airbnb which is supposed to be an online listing of people willing to rent their extra rooms out to short term visitors at a very low rate. I just ran a similar check for you here: https://www.google.com/hotels/?gl=U...otel;d=2014-12-01;n=14;usd=1;si=1cf63376;av=r

    I've also been hearing about uber, an online service whereby people in need of a ride get bids from people in the area willing to give them rides. It is supposed to be less expensive than taxis.

    Best of luck to you and let us know how it goes.
     
    maryb, Sinclair and Valentijn like this.
  4. Sinclair

    Sinclair Senior Member

    Messages:
    129
    Likes:
    41
    I am sorry to hear that Eq. has not worked for you. Adjusting dosage has not been easy but it has certainly helped me going from 2/10 to 4/10. As soon as I reduce it too much or delay intake some very characteristics symptoms of abdomen wall pain and brain fog come back or become more severe. I am not clear whether it is working just for the short term or just for the symptoms and how will I respond to long term use, but so far, it makes this more bearable.

    Getting in touch with the clinic seems the obvious for arrangements, I have tried to phone there without success...without an e-mail is not that easy...(update: I just got in touch with the clinic by phone) : )

    You are very kind for doing this. Many thanks!

    It is a solution of Potassium Sulfate for a warm bath, twice a week. I have not tried supplementing it orally (I have absorption issues I need to fix don't know how)

    Yes, I am actually discarding Magnesium oxide, and just keep in Magnesium Oil, transdermal, I prepare from Magnesium Chloride. (My bad reactions to Vit D improved significantly after starting this).

    I have methylation among the things to do. I had a bad experience with Neurobion injection and I inconsistently take a B complex. I tried sublingual methylB12 but during a setback period, thus hard to evaluate.
    Again, it would be great if I discover how to fix absorption issues...I discovered Neurobiologix, a lotion for transdermal methylation developed by Dr. Kendal Stewart, but I have not tried it yet. He considers low homocysteine as a potential marker for Methylation deficit, which I did not test low but rather in the high range...23andme do not ship their kits to my country...this is another reason to travel
    MethylB12 and MethylFolate are not easy to get here....plus...my absorption issues....thus when a knew about this lotion I saw it as at the easiest way...I really don't know how to start...maybe 23andme....

    This is entirely new for me, I will look at it in detail. L-Glutamine was in my protocol but I overdid when I changed from tablets to powder, with severe effects.

    I am well aware Dr. Chia has not a miracle cure for this, but test limitations from here are significant, so testing is a major reason to put an effort on it as well. (E.g. IgG without titers, no functional testing, no IgG for HHV6, no test for methylation deficiencies, etc.)

    Again, many thanks for your kind message!

    Sinclair
     
  5. Sinclair

    Sinclair Senior Member

    Messages:
    129
    Likes:
    41
    @Never Give Up

    Thanks for your message. I am glad your son is making progress. These are the encouraging stories we need to hear in our bad days.

    Thanks for the airbnb tip as well, think this one match my budget ;).

    I will share my story of course.

    Best!

    Sinclair
     
  6. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    Sinclair - I used to have a major absorption problem, which was primarily caused by low stomach acid, which is extremely common with CFS. I now take hydrochloric acid with each meal that has protein, and this has helped my digestion so much. My sister had the same problem and once she started taking HCL with meals, her digestion improved a lot.

    I'm wondering if you may need to do a liver detox or some sort of cleansing as well.

    Where do you live? One thing that also helped me so much with my digestion was muscle testing done by my chiropractor, and he helped me do a liver detox too.

    On your own you could try adding lemon juice to your water - it helps with digestion and helps cleanse the liver and other organs - even though it's acidic, it actually helps the body become more alkaline.

    Also, I see you're taking T4 - many of us do much better with a product like Armour Thyroid or Naturethroid, which has both T3 and T4. Unfortunately, most doctors only prescribe T4 but some are willing to change, but you have to ask. For more info, see stopthethyroidmadness.com

    Do check out the BCAAs - in combination with glutamine, they might be helpful. I'm anxiously awaiting getting my amino acid lab work done next Tuesday so I can start them back up!

    Mary
     
  7. Sinclair

    Sinclair Senior Member

    Messages:
    129
    Likes:
    41
    Thanks @Mary,

    I have been on HCL Betaine for a while, I recently started a different brand, which seems more powerful. I remember the first time I started intake I felt like nutrients were finally getting into my body after a very large period. I have used apple cider vinegar too.

    However, I still have the idea that absorbing fat is an issue...I don't know, I maybe need to get tested for this...so far I know that without my HCL tablets, I have bad digestion symptoms...

    ...on the other hand....is this something reversible? For the general population under 50, low HCL seems reversible, but I don't know if the same follows for PWCFS....I wouldn't like to be under HCL supplementation for good....

    What liver detox did you try?.....there are so many stories about it....did it work for you?.....there are no many alternatives on functional or biological medecine in my country, Chile, but I am willing to try a "liver detox for PWCFS" .....

    Indeed I ask for lemonade everytime I can. It is curious: before I got into (IMHO) chronic phase of ME/CFS, lemonade was a great symptom relief: one of my initial and major symptoms is a burning pain centered in the abdomen hipocondrius and ascending through my back from there. But now, lemonade is not that powerful, and without the immunomodulators of my protocol, the pain would be even more evident to me...

    T4 is part of my TSH suppression protocol due to a Thyroid Cancer I had in 2012 (now, I am almost certain this was a consequence of ME/CFS, undiagnosed at that time). I remember well the proposal on Armour from the people on the ThyCa forums....My endo refused to even add T3...and I think Armour or the other nature brand are not available here....I am adding it to the list anyway.

    I wish you the best luck with your BCAAs trials, hope to hear good news from you regarding this pretty soon.

    Kind Regards,

    Sinclair
     
  8. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    Hi Sinclair - Fat is difficult to digest and if you have trouble digesting fat, I think it can be a good indication that you are low in HCL and may need more than you're taking. One doctor told me to take enough HCL with a meal such that I felt a slight burning, and then to back off one pill. I take less now than I had to a few years ago. I think we can get our bodies back on track, and then eventually will need less HCL - but I do believe in the short run at least it is very important, so that you can absorb what you need to. All the supplements in the world won't help you if you can't absorb them.

    Your gallbladder may be having problems too - if it's sluggish you will have trouble digesting fats. If fats are a problem for you, it might be good to limit the fats you eat to give your digestion system a rest, and do things like drink a lot of lemon juice and eat a lot of vegies, go easy on meat (which is also hard to digest) and make sure you take enough HCL. At one time I could hardly eat anything and I am much better now.

    I did the liver detox under the supervision of my chiropractor who does muscle testing. I had a job when I was 19 with heavy exposure to chemical solvents and this seemed to be a major toxin in my liver. Based on the muscle testing the chiropractor did, he gave me Parotid PMG and Cholacol II, supplements made by Standard Process. So it was specific for PWCFS. I'm sure you know there lots of herbs that are very good for the liver - a couple are milk thistle and dandelion. Spanish black radish is also supposed to be good. and lemon juice. There are a lot of different protocols on-line. The main thing I would suggest is go slow. If one's liver is highly toxic, the detox can be a bit rough.

    I'm not familiar with the burning pain in your abdomen. I never had that symptom. I was helped so much by my chiropractor with several digestion issues, I can't recommend what he did highly enough. If you could find someone like that, they might be able to help you.

    We are so much on our own with this illness and so much is trial and error. I wish our doctors were better informed but most seem to know almost nothing about nutrition and just hand out drugs.

    I wish you the best with everything and will definitely post how my BCAAs trials go! Thanks for your good wishes -

    Mary
     
    Sinclair likes this.
  9. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    I think enterovirus has a lot to do with stomach pain, hypochloridia, and thus poor digestion/absorption. It's only anecdotal, but after I started taking Equilibrant I perceived a huge increase in stomach acid production and greatly improved digestion based on the "end result", to put it nicely. It almost felt like my stomach was making too much acid but hopefully it will balance out as things improve.
     
    Sinclair likes this.
  10. Mary

    Mary Senior Member

    Messages:
    2,803
    Likes:
    6,282
    Southern California
    Oops - I left out a word in my post above - the detox I did was NOT specific for PWCFS. It was specific for chemical solvents although those products might be useful for other toxins as well. One glass of wine used to make me sick for an entire day, and 2 glasses would make me sick for 3 days before I did the detox, and I can now enjoy a glass of wine with no ill effects (plus my digestion is just overall way better).
     

See more popular forum discussions.

Share This Page