Friends, Here are some notes on one of the ILADS talks yesterday. I took notes on a few talks, and will post more. All mistakes are my own! Moderators, please edit out dosages if these are not appropriate to post!
------ Dr. K (CO): New Ideas on Pain Management
Testosterone (T):
--is related to much more than libido: tissue growth, mood, energy, healing, muscle mass, blood-brain barrier integrity, Dopamine/Norepinephrine system, opioid receptor binding, exercise tolerance.
--Low T can result in decreased vitality/energy/sense of well-being, depression/decreased motivation, reduced cognitive capacity/memory. This is true for both men and women.
--T replacement may increase overall health (men and women)
--He states there is no relationship between prostate cancer and T replacement
--Judging if T is low is relative to the individual. For example, if one�s typical level of free T is 25, and results come back as 20, that may be low for that person even if it�s technically within the normal range.
--T deficiency is correlated with cardiovascular risk, insulin resistance/metabolic syndrome.
--He says T replacement can improve pain control.
--Signs of low T include lowered bone density, reduced muscle mass, increased weight
--Must try to determine source of low T. If the cause is �higher up� in the system, supplementing with T may suppress pituitary functioning. For example, can use a clomiphene stimulation test (for men and women).
--He recommended compounded transdermal T, starting with 50 mg and going up. He says average dose is 100 mg.
Stimulants and pain control:
--For some people, Adderall can lead to big improvement in mood, energy, pain level. He says you will know very quickly if it�s working. There is a risk of increased agitation, which will also become apparent quickly.
--He does not see increased hypertension with Adderall.
--Start dose low and titrate up.
He also discussed the merits of medical use of cannabis, which is legal in his state (he joked that you can even get it baked into gluten free brownies!), with improvement in colitis and lowered oxidative stress. I didn�t take a lot of notes here, since it was not relevant to our situation. ----
Posted by hopeful4 (Member # 8486) on :
Thanks for posting this. He was an excellent speaker. I didn't get to take many notes. Brain overload.
Best wishes.
Posted by Lymetoo (Member # 743) on :
Thanks, viva. Did you write down anything about the compounded (I think) emu oil and two other ingredients for pain?? I can't remember what the other ingredients were.
I heard that about the GF brownies.. too funny!
I have supplemented with testosterone for 11 yrs. Most women don't know that if you have no ovaries you have no testosterone... and males and females need it.
I can definitely tell that my energy level drops when I don't use it. (I get lazy) .. and I also get depressed if I go too many days without it.
So, in short, it works!
Posted by Keebler (Member # 12673) on :
- Thanks, Viva. Either the 3 hour time zone difference & /or streaming cutting out, I missed a lot of this. I really appreciate the notes.
Looking also for anyone who saw the herb / naturopathy session. Missed that one totally. Sigh. -
Posted by viva (Member # 8183) on :
Keebler, I'm in the midst of typing up the herbalist's notes. Will post them later. I also took notes on Dr. N (environmental medicine) and Dr. B (not THE Dr. B) on complementary and alternative medicine. If those would be of interest, I'll try to make sense of what I wrote and post them as I can get them typed!
Lymetoo,
Just found my notes on the compounded topical with emu oil. The other two ingredients (at least, as I wrote them down) are: DMSO (?) Magnesium
I'll share your observations about how testosterone helps with my husband, who always tests as deficient, and refuses to take pharma antidepressants!
viva
He said this combo was good for tendon pain.
Clinical Response Formulas, which makes herbal tinctures, has two topicals on their website which have emu oil in them: CAT cream and BST cream. Husband has used their tinctures, but no direct experience with the creams.
Posted by Keebler (Member # 12673) on :
- Viva,
you are a Dear. Right up my alley - so, yes for all - I devour all this kind of information - but only if it's not too taxing to you:
* the Herbalist/ND, Dr. M. "The Role of Naturopathy and Herbs in Treatment of Tick-Borne Illness."
* Dr. N--- "Identifying Environmental Illness and Mold Exposure in Patients with Persistent Lyme Disease."
* Dr. B--- "Overview of Integrative Patient Care in Tick-Borne Diseases"
--------------- The PT / ET time diff. is profound and I just couldn't get up at 5 a.m., or even 7.
I found Dr. N's website so that helps.
I also just found many Google links for the herbalist.
It would be nice to see more about these presentations, though.
And, hey, if you can't do any more, no worries. I often promise I'll do something, with full intention, but then my body may not be able to follow through. So, no pressure. Just enjoy a cozy Sunday. -
Posted by seibertneurolyme (Member # 6416) on :
Thanks Viva.
Hubby just had his testosterone levels checked. The normal range from Labcorp for free testosterone is 7.2 -- 24.0
His level is low at 6.9
Anthem BCBS says that testosterone supplements require preauthorization. The normal retail cost of the supplement prescribed by his LLMD is around $500 per month. We will see at our appointment next week if the doc has been able to get the preauthorization or if it is going to be an appeal issue.
I had forgotten that testosterone had anything to do with bone density. Hubby has severe osteoporosis. It has improved slightly after 2 annual injections of Reclast. Maybe the testosterone is the missing piece of the puzzle.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Thanks, viva!!! He mentioned Key Pharmacy for the compounded ingredients, I thought.
Emu oil DMSO (?) Magnesium
---
Bea .. I spend about $15 a month on my testosterone.
Posted by Rumigirl (Member # 15091) on :
You can also easily increase your testosterone by taking DHEA, or even better, pregnenelone and DHEA. I'm surprised that he didn't mention it. Of course, the ideal is to test your levels, but most ill people, or people above early middle age, will be low in all or most of these hormones.
Posted by sickofsick (Member # 29258) on :
recently started the compounded cream. It is from Key Pharmacy. 20% dmso, 20% magnesium, 3% emu oil
Posted by seibertneurolyme (Member # 6416) on :
Rumigirl,
The DHEA approach does not always work. Hubby has been on 50 mg of DHEA 3 times per day for a couple of years. His DHEA tests high but his liver is not converting this master hormone to testosterone like it should. Don't know why, but that approach did not work for hubby.
Hubby was also taking pregnenolone at the same dose I think.
Bea Seibert
Posted by Keebler (Member # 12673) on :
Scroll down to see the book about Testosterone by Buhner.
Clink on the book photo to read more about the contents. It seems written for males and, maybe not so much for lyme patients, yet it may contain some good information.
This part would be for everyone: Reveals scientific evidence of testosterone-blocking agents in the environment . . . -