Confused about treatment options

[louabird]

So, I've had MECFS for almost 4 years. I have been super reluctant to try GET and CBT but have tried powder magnesium which worked for the pain, for a bit. Melatonin, magnesium supplements, B12 (which made me super tired) and have taken some naturopath paths.

I'm currently at a stage where I'm confused with what options I should choose for treatment. I want a doctor who is willing to delve into diagnostic testing and suggest possible paths for treatment. I very much like Dr Chia's way of approaching ME/CFS and think he's hit the nail on the head. I was thinking I should get tested for Lyme Disease to either rule that out or if I have it, get treatment.

What do other people suggest? I'm currently in Melbourne, Australia.

x

 

[louabird]

You can see my symptom list here: http://forums.phoenixrising.me/index.php?threads/symptomatic-me-since-2008.21142/#post-321704

 

[GcMAF Australia]

So, I've had MECFS for almost 4 years. I have been super reluctant to try GET and CBT but have tried powder magnesium which worked for the pain, for a bit. Melatonin, magnesium supplements, B12 (which made me super tired) and have taken some naturopath paths.

I'm currently at a stage where I'm confused with what options I should choose for treatment. I want a doctor who is willing to delve into diagnostic testing and suggest possible paths for treatment. I very much like Dr Chia's way of approaching ME/CFS and think he's hit the nail on the head. I was thinking I should get tested for Lyme Disease to either rule that out or if I have it, get treatment.

What do other people suggest? I'm currently in Melbourne, Australia.

x

Don Lewis At CFS discovery i believe has the most experioence with CFS in Melbourne if not Australia>
www.cfsdiscovery.com.au/best wishes

 

[GcMAF Australia]

he also does Lyme tests , well not him personally
Also some Lyme support groups are very helpful
- even if you dont have Lyme

 

[louabird]

Lovely! Thank you x

 

[taniaaust1]

I second what GcMAF has said.. and suggest to go and see Dr Lewis for ideas and more tests.
............

Something you could try while waiting to get in to Dr Lewis is hair analyses if u havent already done so, to see what comes up there. This can be done by going throu a doctor or without a doctor (it was something like $20-$30 cheaper if backed by a doctor.. i think was around $130??) . Going by test findings beats blindly just guessing what to buy and trial next.

I picked up some helpful things throu that and it helped me know what supplements I needed (which then did really help me.. my brain is better then it was as Im now supplementing molybdenum as the hair test showed I had a deficiency (almost nil) of this essential trace mineral. Due to my results I also started selenium..and have far better nails and hair due to that. I couldnt previous grow my hair and now it just grows. My result also showed up very high copper (thou they say hair tests are less relible when it comes to excess things as things like shampoos and things in the environment can affect results so Im planning to follow up on the copper result with other test (heavy metal challenge).but deficiencies... they can be great at picking those up.

The lab my CFS specialist had me use for that was "Interclinical Laboratories" They gave me a 9-11 page report with the results too . They are in NSW but one sends the hair in from whereever you are. For more info on that you can email lab@interclinical.com.au or phone 02 9693 2888

 

[louabird]

I second what GcMAF has said.. and suggest to go and see Dr Lewis for ideas and more tests.
............

Something you could try while waiting to get in to Dr Lewis is hair analyses if u havent already done so, to see what comes up there. This can be done by going throu a doctor or without a doctor (it was something like $20-$30 cheaper if backed by a doctor.. i think was around $130??) . Going by test findings beats blindly just guessing what to buy and trial next.

I picked up some helpful things throu that and it helped me know what supplements I needed (which then did really help me.. my brain is better then it was as Im now supplementing molybdenum as the hair test showed I had a deficiency (almost nil) of this essential trace mineral. Due to my results I also started selenium..and have far better nails and hair due to that. I couldnt previous grow my hair and now it just grows. My result also showed up very high copper (thou they say hair tests are less relible when it comes to excess things as things like shampoos and things in the environment can affect results so Im planning to follow up on the copper result with other test (heavy metal challenge).but deficiencies... they can be great at picking those up.

I second what GcMAF has said.. and suggest to go and see Dr Lewis for ideas and more tests.
............

Something you could try while waiting to get in to Dr Lewis is hair analyses if u havent already done so, to see what comes up there. This can be done by going throu a doctor or without a doctor (it was something like $20-$30 cheaper if backed by a doctor.. i think was around $130??) . Going by test findings beats blindly just guessing what to buy and trial next.

I picked up some helpful things throu that and it helped me know what supplements I needed (which then did really help me.. my brain is better then it was as Im now supplementing molybdenum as the hair test showed I had a deficiency (almost nil) of this essential trace mineral. Due to my results I also started selenium..and have far better nails and hair due to that. I couldnt previous grow my hair and now it just grows. My result also showed up very high copper (thou they say hair tests are less relible when it comes to excess things as things like shampoos and things in the environment can affect results so Im planning to follow up on the copper result with other test (heavy metal challenge).but deficiencies... they can be great at picking those up.

The lab my CFS specialist had me use for that was "Interclinical Laboratories" They gave me a 9-11 page report with the results too . They are in NSW but one sends the hair in from whereever you are. For more info on that you can email lab@interclinical.com.au or phone 02 9693 2888

The lab my CFS specialist had me use for that was "Interclinical Laboratories" They gave me a 9-11 page report with the results too . They are in NSW but one sends the hair in from whereever you are. For more info on that you can email lab@interclinical.com.au or phone 02 9693 2888

Thanks a bunch, I'll look into it x

 

[taniaaust1]

I did have acute ear infections before I got Glandular Fever (mono). It just appeared to be phantom pains that I got from overexertion.

My symptoms are:

• Muscle aches and pains
• Back pain w/ spasms
• Migraines with auras (blurry eyes and photo flash)
• Low Blood Pressure when needing food despite no hunger sensation
• Exhaustion / Fatigue, sometimes so severe I can't move
• Sciatica
• Painful bowel movements, suspected IBS
• Constantly congested
• Occasionally bouts of chest soreness and pressure
• Episodic asthma
• Sensitivity to sound
• Inability to exercise without post-exertion malaise
• Dizzy and nauseated spells
• Unrefreshing sleep
• Cycles of insomnia and sleeping too much

I just checked out your symptoms and from those.. due to your back pain and spasms. I also suggest to see if you can find a good chiropractor (by good I mean one who others in your area can recommend as many of them are crap.. if one tells you you will need to go back a ridiculous amount of times (ask them how many treatments they usually suggest) seek out another. A very good one you will feel a bit better in some way after each treatment and should notice improvement at least by the second appointment..well that is my own expectation of any good chiro I see).

What I found is that not only was my back being an issue but it also was making some of my ME/CFS symptoms worst eg the constant dizziness I used to get which I blamed on the ME.. turned out was due to my back and a chiro was able to fix. Some chiros can also help things like asthma and migraines.

I nowdays (cause I cant see my excellent chiro no more), I see an orthopedic physio (there are different kinds of physios).. ortho ones deal esp with the bones .. mine works like a chiro does but also is a physio. You may also find one of these helpful for your back. (I found other types of physios useless).

• Constantly congested

Large doses of vitamin C eg 2-3 g with bioflavinoids (many come with one type of these or another in it..the more the better) may help that.

• Dizzy and nauseated spells

if that is usually happening when standing.. consider you may have coexisting dysautonomina which often happens with ME eg POTS or NHM. A standing poor mans test which you can do at home will often help someone to figure out if they have POTS going on. POTS can be treated if you have that giving you symptoms.

 

[louabird]

Thanks! I'm booked in/on the waiting list for CFS Discovery. Thank you all for the invaluable info x