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azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 4/20/2014 4:00 PM (GMT -7)   
hi you guys. I'm new here and just looking to connect with other people who are dealing with this illness. I'm wondering if any of you have tested positive for lyme or if you think that may be an underlying cause of cfs?

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 4/24/2014 7:36 AM (GMT -7)   
Thanks appreciate the response!

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 4/24/2014 3:36 PM (GMT -7)   
Hi azsusan, for me, my me/cfs/fm came on the heals of the West Nile Virus. Don't think I have ever been exposed to a lyme tick.

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 4/24/2014 4:38 PM (GMT -7)   
hhmmmmm well, kinda' hard to know what to do to cure the cfs if you don't know what caused it. I've been having bouts of fatigue for over 15 yrs now, and it just got progressively worse over that time until it became completely debilitating over the last 1.5 -2 yrs. i WAS bitten by a tick at least once around that time--possibly many more times that i wasn't aware of, and i do have some neurological symptoms that may be explained by lyme. debating as to whether i'll do the testing--my impression is that the tests that my ins would pay for are not "sensitive" or accurate, and the tx, for the most part, is the same as for cfs. i've made some significant improvement by just changing my diet, progressive exercise, removing some stressors. i was REALLY healthy 15 yrs ago, and just feel like things have gone downhill from there, but i HAVE had very stressful situations (some of which i've created, to a large degree, due to ignorance on my part, some just living issues) in my life, so maybe stress has played a big part.

so, have you found things that have worked with the fatigue? i've had hormones balanced, inc thyroid, did help some, identified a bunch (MORE) food that i have sensitivities to, and that helped some, went on a low fat, low carb diet--that seemed to help--the progressive exercise seems to be helping, but i'm still fatigued. any ideas? thanks!!!

vacant
Regular Member


Date Joined Oct 2012
Total Posts : 131
   Posted 5/2/2014 3:04 PM (GMT -7)   
Hi,
I feel bad for you but I feel the same as you...Dix with ms in 06 and lyme in 2010went for food allergy my dr gave me thyroid...my feet became red now 2years malade stop so tired do not know what it could be, but worse now. ...you seem to have similirariry as me, let me know

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/2/2014 4:49 PM (GMT -7)   
Well what I can share with you is what has helped me to start feeling better. 1) getting all the allergens out of my diet. Not only the foods I tested positive for but many others that they don't test you for e.g. canola oil. The only way you can tell for sure what you're allergic or sensitive to is to go on a non allergenic diet for 2 weeks and then start adding things in slowly. If you start to feel better after being on that diet that would be an indication that you may be sensitive to some foods. People can be allergic to many things that aren't included in allergy tests.
2) I recently went on a very low carb diet and have been feeling much better since I did that. I'm now reading terry wahls' book. She has arrested her ms and is highly functioning by changing her diet. So I'm following her recommendations in hopes that it will help
3) graded exercise. I could barely walk 5 min 3 mos ago but I forced myself. Now I'm up to 20 . I think this has really helped.
I've spent a small fortune on drs diagnostic tests meds and supplements and after spending about 20k on all this I think the only thing that's really made a significant difference is changing my diet and exercise. I wish I had tried that first.

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/2/2014 4:51 PM (GMT -7)   
Oh yeah I definitely think that getting the hormones balanced is really important. I think that has also helped a great deal.

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 5/2/2014 7:59 PM (GMT -7)   
Removing allergens and simple carbohydrates from your diet are things that help people with Lyme disease, because the infection feeds on simple carbs and worsens/triggers/causes intolerances and allergies.

I'm getting tested for Lyme based on the fact that when I had my CD57 tested, the level was 30, which is a good indicator of chronic Lyme disease or one of 3 other things (Chlamydia Pneumonia, AIDS and tuberculosis). I think it cost about $60 for the CD57 test. The Lyme and co-infections testing is costing a couple grand because I'm using Infectolab and Australian Biologics for the best testing available instead of wasting my time and money with less reliable labs.

As a first step, why don't you get your CD57 tested? It's a simple blood test and not too expensive.
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/2/2014 9:43 PM (GMT -7)   
I will definitely look into that. I've been grappling with whether or not I should pursue testing. I think my insurance may pay for the test you've mentioned here. I've pretty much exhausted my financial resources and I guess the treatment at least from my way of thinking will be the same. I don't feel that taking antibiotics is the best way for me to treat whatever it is that I have and since lyme testing is so unreliable I had decided not to pursue it. I'd be interested to hear how your tests turn out.

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 5/3/2014 2:17 PM (GMT -7)   
That's good :) If your CD57 is below 60, then I think it is definitely worth getting tested by Australian Biologics.
http://www.sydneylymeclinic.com/lyme-disease/testing
http://www.australianbiologics.com.au/dna-testing-sydney.html
Please see both these links as they both contain important information for your consideration.

My Infectolab results were weak positive for one the Lyme co-infections and negative for antibodies to Lyme.

Elispot Lymphocyte Transmormation Test - Borrelia LFA-1 = 1 SI
- this was interpreted as a negative result, even though there was a slight "something" there. However, my immune system is so low that I still believe there's a strong chance I have Lyme. Also, I may have a different strain of Lyme than the one they were searching for.

I wish that I'd just gone straight to being tested by Australian Biologics instead of trying the cheaper (but still expensive!) Infectolab first.

If you CAN get a diagnosis with a blood test and therefore get treatment, isn't it worth it despite the 50/50 sensitivity of the test?

Why have you decided that antibiotics aren't the best option? Just curious. You can look into natural treatment for Lyme through a naturopath, if you prefer to not use antibiotics. There are different options for treating chronic Lyme - not just antibiotics.

I have not yet been able to send my blood and urine to Australian Biologics as there is currently a delay before they will send out the test kit to me. I will post those results when I know them :)

Post Edited (Jasmine Grace) : 5/3/2014 7:24:01 PM (GMT-6)


azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/3/2014 8:37 PM (GMT -7)   
Jasmine i read dr David jernigan's book and he doesn't believe in using antibiotics and his argument made a lot of sense to me. He basically says that as soon as you start throwing abx at these viruses and bacteria that they go into hiding and also mutate only to come back later even stronger. Maybe they're effective if you catch them very early but I've probably been infected 15 to 20 yrs. Stephen buhner also doesn't believe in using abx and also makes a good argument against them. Jernigan believes that there are many people who have these infections who never get sick because their immune systems are strong enough to keep the infection at bay. I've also read at least a dozen other books on lyme and there are many people who have been on abx for years who are still sick. So I guess I've decided that for me I'd like to try something else first. I think you might be onto something as far as the virus and coinfections thriving on carbs also sugar. So maybe starving it out with the diet and nutrient dense foods to support immune system is best place to start? I think leaky gut may play a role here also. So for me getting tested is not as big an issue as doing all this other stuff. Although I may still end up doing testing. I just downloaded klinghardts protocol which looks like a really good road map for navigating natural treatment. I've seen 5 different naturopaths in the last 2 yrs and really didn't get a lot of help from them but I didn't have the awareness I have now about lyme so never brought that up and neither did they. I've just exhausted my financial resources.

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/3/2014 8:39 PM (GMT -7)   
I think if you have the $ to do the testing it would be nice to know for sure

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 5/4/2014 4:38 PM (GMT -7)   
Wow, ok, I see what you mean now. It fits with things I have read in the Lyme forum on this website too.

It is my understanding that many of the natural treatments for Lyme are all about building up the immune system to fight the infection itself. Maybe you should look for Lyme Literate Naturopath, or show the protocol you're interested in to a naturopath of your choice who doesn't know much about Lyme but is innovative and flexible.

My LLMD is both a doctor and naturopath, so he is working on boosting my immune system before he'll introduce any antibiotics.

Luckily, I have a scholarship which recognises my outstanding academic achievement and community involvement before I became ill, and the scholarship was granted to me to use for healthcare so that I can get better and go back to studying university. I still have to budget carefully and I still have to spend my own money on healthcare too, but the scholarship eases a lot of the pressure on my healthcare decisions.

You don't need a diagnosis to boost your immune system, although naturopathy will cost money too. I'd still recommend the CD57 test, which will give you a good indication of the current state of your immune system which will be a good guide to treatment.
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

azsusan
Regular Member


Date Joined Apr 2014
Total Posts : 45
   Posted 5/4/2014 5:36 PM (GMT -7)   
Jasmine that is so awesome that you have that scholarship! You must have worked really hard to get that. I hope you can get back to school soon! I've been thinking about making an appt with a naturopath I saw several years ago. She's very good but also very expensive. But there are some things I'm going to try first. I've just spent so much money already that I'm reluctant to continue to do that. Now I'd be using credit card but if it would help me get back to work it would be worth it. What are you planning on doing in school?

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 5/5/2014 2:53 AM (GMT -7)   
Thanks :)

Maybe you could compile all the theories and treatment ideas you have, in detail, in step-by-step plans, and show them to either the naturopath or a doctor for review just so they can give you a professional perspective and advice on those treatments.

Bachelor of Science (Occupational Therapy).
Age: 19
Conditions: Celiac disease, Fibromyalgia, Chronic Fatigue Syndrome, neuropathic pain, FODMAP intolerances, allergies, anxiety, depression, acid reflux, dermatitis, tinnitus, and more.
Being tested for: Lyme, Lymphoma, Bartonella, thyroid disorders.
Goals: to be an occupational therapist; to explore and change the world. "Reach for the moon; even if you miss, you will land among the stars."

Surm1234
Regular Member


Date Joined Nov 2014
Total Posts : 69
   Posted 3/5/2016 7:49 PM (GMT -7)   
Hi Jasmine sorry just been following your posts.Are you from Australia ?
Diagnosed in october 2014.Infected for approximately 4 years.Currently on ABX and Byron White formulas. and other supplements.

Dancing Dawn
Regular Member


Date Joined Feb 2015
Total Posts : 87
   Posted 3/16/2016 11:12 AM (GMT -7)   
Hello Azsusan, I see all these posts were written in 2014. I don't know if you're still a part of this
group. If you are, I'm just curious? Did you ever get tested or treated for Lyme? I agree with
what Jasmine wrote. Not all treatments require antibiotics. Some of the herbal ones I've been on
were affordable and have helped.
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