It took a holistic health physician to come up with a strategy

Discussion in 'Fibromyalgia Main Forum' started by ericdinbstn, Apr 8, 2009.

  1. ericdinbstn

    ericdinbstn New Member

    I've been to my primary care doctor, two rheumatologists (one who actually has been good for pain management), an infectious disease specialist, and a physiatrist. Finally a co-worker recommended Dr. Glenn Rothfeld of Whole Health New England. He's an integrative medicine doctor. My first visit was an hour of history and examination, followed by what felt like a pint of blood being drawn, and two urine tests. Yesterday I went in for my results fearing the same response I'd gotten every time before "All your results are normal." I was pleasantly surprised when Dr. Rothfeld said "I've found some things and I think there's a lot we can do."

    Had a lyme test done by Igenex (IgG Western Blot) the test was negative, however one "double starred band" was indeterminate and I may get another test in 4-6 weeks. IgM had several indeterminate bands. He then went through the rest of my results I had a high vascular endothelial growth factor which I think has something to do with elevated inflammation. Many of my lymphocyte levels weren't below range but were at the low end, testosterone was at low end of range. I had low Absolute neutrophils (which I don't remember what that indicated) and high Gliadin antibody (gluten sensitivity), low thyroid function, and the list goes on. I also found out I have food allergies to barley, wheat, malt, cow's milk, wheat, yeast, yogurt, rye, peanuts, and gluten. Mild sensitivity to eggs, garlic, cashews, and cottage cheese. I was astonished. I had no idea about the food allergies. I also found out about several vitamin and mineral deficiencies.

    Sorry for the long post but I was just so thrilled that the doctor acutally told me he found something. I was also wondering if others have found out similar results. So to summarize the main concerns and problems (besides the chronic fatigue and pain) I have low reserves of several nutrients, hormones, immune system, neurotransmitters, metabolism).

    I'm going for a follow up in 6 weeks but in that time I'm going to have 4 Mg/B IV treatments (vitamin infusion), and have been given Armour Thyroid, added DHEA, and the supplements NT Factor Energy, WH Cleanse, RiboCardio. The idea is to get the reserves up first and then deal with inflammation and biotoxicity.

    I don't know if it will help, but I'm hopeful. I have to start a gluten free diet, and stay away from cow's milk, and peanuts. I think the diet is the scariest for me. It's a big change, not saying I won't do it, anything to feel better, but it will be a big adjustment.

    Those of you who took the time to read all of this thank you. I just had to post to a place where I know people would understand that blood test results showing deficiencies and higher or lower than normal levels of body chemicals, etc is actually GOOD news.

    Thanks again, any advice on transitioning to a gluten free diet or hints would (as always) be appreciated. I wish all of you good health and pain free (or at least low-pain days).

    Be well everyone,

  2. shari1677

    shari1677 New Member

    Wow - I didn't know that about peanuts. I love peanuts - I actually eat alot of them everyday in addition to PBJ sandwiches. Huh - gonna have to stop that and see what happens.

    I started a thread called "organic" any reply will be appreciated. Thanks!
  3. xchocoholic

    xchocoholic New Member


    congrats on getting a good integrative doctor and getting some important tests run ... IMHO, this is the best route for CFS / FM patients to pursue at this point. I started seeing one in 2007 and have had similiar tests run.

    I've had CFS since 1990 and have made significant progress since going GF in 2005. The biggest change has been no longer needing a motorized cart since I can walk normally now.

    You may want to consider going on the Paleo diet as opposed to getting started with the GF grains option. Many of those with CFS have hypoglycemia and this diet can help control blood glucose levels. Dr. Myhill has an article on this ...

    HTH .. Marcia
  4. Shananegans

    Shananegans New Member

    I just posted something similar to this. Only I figured it out on my own as there are no holistic docs in my area to help. Sound like Celiac Disease, same thing I know I have. Causes poor nutrition and a laundry list of other food issues and lack of vitamins. Also causes all the other symptoms related to FMS.

    I wish you the best of luck! I have recently gone gluten free and vegan pretty much and I hope it fixes the problem. It would be great to have my life back.

    best wishes!

    PS there is a website (a good website) of information about a gluten free diet. Well there are tons of websites but this one has helped me the most. Google Karina's Kitchen, it will help with the transition to gluten free. It is a difficult and frustrating transition, but once you get used to it, it becomes a normal part of life. Good luck! [This Message was Edited on 04/09/2009]
  5. Nanie46

    Nanie46 Moderator

    Hi Eric,

    I see that you had an Igenex western blot. I found out after 21 years with a FMS diagnosis that the cause of these symtpoms is a chronic borrelia burgdorferi infection....lyme.

    Do not go by the "negative" interpretation...that is only a reporting criteria, not a diagnostic criteria.

    My LLMD says that an IND result on a species specific band is like a doesn't matter how dark it's still the same fingerprint.

    It is important to compare your individual band results, including the IND ones, to the western blot info on page 7 of Dr B's guidelines..........see link......

    Lyme is a clinical diagnosis...means it is based on history and symptoms and can be supported by labwork. It is NEVER ruled out based just on a lab test. Testing is not foolproof, although Igenex is the best.

    Also take a look at the symptom checklist on pages 9-11 of the same paper. If you have a number of symptoms on the list and have one species specific band, plus band 41, you most likely have lyme.

    You should print that entire paper and take it to your holistic Dr.

    There are hundreds, probably thousands of people diagnosed with FMS or CFS who later found out the cause of their syndrome of symptoms was chronic borreliosis.....including me.

    Many of us do not remember a tick bite or rash...some people never get a rash.

    Those same ticks also spread babesia, bartonella, ehrlichia, anaplasma, rocky mt spotted fever, Q-fever, etc.

    Here is more info you should definitely read... (The real Lyme experts follow the ILADS guidelines) (also has a great symptom checklist in the back)

    Over time, the chronic infection causes a wide array of imbalances. I also have food sensitivies...22 of them.

    Feel free to post your individual band results here if you like....or you can also find me on the lyme board. I'd be glad to help you in anyway possible.

    Good luck!
    [This Message was Edited on 04/09/2009]