My adult daughter has not been able to start treatment yet.
I suspect that she has Lyme, babesia and bart.
Her worst symptom by far is overwhelming fatigue.
She has 2 small children and a husband, so she is desperate to find help for the constant flu-like fatigue.
Her other prominent symptoms are insomnia, migraines, trigeminal neurlagia and muscle pain...plus lots of others.
Knowing that she is unable to start antibiotics or Mepron, etc at this time, please give me your ideas for natural treatments and supplements that might help her the most.
I will have to buy them since she isn't working and we already help them.....and I am already paying full price for Mepron and everything else for me.....so I don't want to over do it.
I want to get her the most important few supplements that might help her.
I was thinking Artemisia and sublingual B12?
What do you think??? Cat's Claw? or something better for lyme?
I believe she is taking Cymbalta for depression and pain.
What's the best plan of attack for someone who isn't on antibiotics yet???? Help please!
Posted by jamieL (Member # 16563) on :
LLMD lists the following supps:
Vitamin B12 shots Ribose Phos Chol (phosphorous and choline) MSM (methylsulfonylmethane) 6000-12000 mg daily SAMe L-tyrosine ALA (600 mg X 2 daily) Medium Chain Triglycerides Acetyl L Carnitine Water- drink a quart as fast as you can
I hope this helps!
Posted by jamieL (Member # 16563) on :
I didn't mean to imply she should take ALL of these at the same time... just to be clear.
Posted by seekhelp (Member # 15067) on :
That looks like a familiar list JamieL.lol. Pg #45 of 105? Posted by jamieL (Member # 16563) on :
I figured half the board has seen this guy. Posted by Tracy9 (Member # 7521) on :
Adderall Provigil
Posted by seekhelp (Member # 15067) on :
Doc's gotta love Lymenet I bet. lol.
quote:Originally posted by jamieL: I figured half the board has seen this guy.
Posted by bettyg (Member # 6147) on :
dekrator, no suggestions; just giving you my moral support my friend and for your daughter; i really feel for her having 2 young kids to boot. Posted by Dekrator48 (Member # 18239) on :
JamieL,
Thank you for the list of supplements that your LLMD recommends.....I really appreciate it!
Tracy9,
Thank you for your suggestions, also!!
bettyg,
Thanks for the moral support!! I don't always feel that I am helping my daughter as much as I should, because I am sick myself.
Posted by glm1111 (Member # 16556) on :
You might want to consider salt/c (sea salt) since they both support the adrenals. Sea salt is a natural bacteriocide. Also pantothentic acid (b-5) is a really good adrenal support.
Gael
Posted by lymetwister (Member # 19590) on :
I'm ready to get some jumper cables and hook them to my car. The red to my left arm and the black cable to my right.
All kidding aside, you might want to try the Salt/C, it works great for the adrenals if thats the cause.
LT
Posted by Pinelady (Member # 18524) on :
I did OJ and salt. Colloidal silver is another optional I did for 5 months before treatment. These 2 kept me out of a wheelchair.
Posted by TF (Member # 14183) on :
Tell her to try Benadryl for the trigeminal neuralgia. It worked for me when nothing else did.
I would take it daily if I were her. I think it works by keeping down swelling in sinuses, so the trigeminal nerve doesn't have so much pressure on it. Just my speculation.
Posted by Dekrator48 (Member # 18239) on :
Gael,
Thank you for your suggestion..I'll look into it.
lymetwister,
Thanks for also mentioning salt/c....I need to read about this because I am concerned about electrolyte imbalance.
Pinelady,
Thanks for passing along what worked for you also.
TF,
I mentioned to her about the benadryl and she said Bendadryl makes her so drowsy and "loopy" that she can't function. I know it always did that to me also.....too bad though....thanks.
kathy,
Thanks for your ideas! When her PCP comes back from maternity leave she is going to ask about B12 injections.
Posted by CherylSue (Member # 13077) on :
Methylcobolamin B12 shots put me back to work. Same-E worked for a bit, but don't take it indefinitely. Then, it stops to work, or at least it did for me.
Short prone naps during the day (15-30 minutes.) Take as often as needed.
Posted by Dekrator48 (Member # 18239) on :
Thanks CherylSue...I hope this is a possibility for my daughter too.
Posted by Shosty (Member # 12232) on :
Fatigue can be related to migraines. Does she have a neurologist?
Fatigue can be related to thryoid problems and adrenal gland problems. Do you know what her TSH or cortisol test results might be? Does she have an endocrinologist?
If neither of the neurologist or endocrinologist seems like a good idea to you (and many of us go through these medical wild goose chases), then I would suggest finding an integrative medicine MD, a functional medicine MD, or a naturopath to help with this. Some chiropractors might help also.
I would not just come online and get suggestions on supplements here, no matter how helpful they might be to many: each individual is different. I think, with the complexity of your daughter's situation, you should seek help and not fool around with us amateurs.
Antibiotic treatment, when possible, might help, but it also might not.
Posted by WildCondor (Member # 434) on :
Methyl B12 shots are great for fatigue!!
Posted by WildCondor (Member # 434) on :
quote:Originally posted by TF: Tell her to try Benadryl for the trigeminal neuralgia. It worked for me when nothing else did.
I would take it daily if I were her. I think it works by keeping down swelling in sinuses, so the trigeminal nerve doesn't have so much pressure on it. Just my speculation.
Benedryl can make you even more tired!!! Be careful with antihistamines, they can cause extreme fatigue.
Posted by ebbakarin (Member # 16362) on :
I would add, too, that epsom salt baths actually made my fatigue drastically worse, especially in the beginning.
It's part of the detox, though, so it does have a benefit for clearing part of the cause for the fatigue.
I would try starting with a small amount of salt in cooler water and working up to more salt and hotter water (which works better).
Posted by j_liz (Member # 20496) on :
Daily B12 shots did not help me, but B Complex did. I was getting them once a month, now I am getting them every 3 wks, since my other injections are sched. for that. My niece gets them more frequently, but she has someone willing to give her the shots, so she got a script for it. My LLMD has me taking B complex sups, too.
I double my Fulvic Minerals after my epsom salt bath and it stops the horrible after effect.
My LLMD suggested at my last appt. to do a full body cleanse (all the cleansing organs)for the fatigue. It is by Blessed Herbs and is expensive, but it is so organized! And like I said it cleanses all the organs and does it in a methodical way.
It has a booklet to mark off when you take the herbs and makes it so even a Lyme brain can do it. It even has tubes to go portable with you.
If you can't afford that just do some cleanses.
liz
Posted by Dekrator48 (Member # 18239) on :
Shosty,
She has had extensive treatment by neurologists and is on migraine meds.
I feel certain that her fatigue and migraines are related to the tick borne infections that she has.
Too bad the neuro docs and all the other docs she sees are too uninformed to even think of lyme and coinfections.
Thanks for your response.
Wildcondor,
That's what I keep hearing, so she will check into this! Thanks!
ebbakarin,
Thank you for your suggestions!
j_liz,
Thanks for your ideas! I did get her some B complex caps by Twinlabs to take.
Posted by cactus (Member # 7347) on :
Haven't read all replies very carefully (just skimmed) so please excuse any repeats.
For fatigue, she could try (not all at once!):
Rhodiola Rosea
Magnesium Malate
B-12 injections (methycolbalamin with no preservatives)
And I must admit that Provigil got me through a lot of days.
Finally - you said you're paying full price for Mepron? Please visit GlaxoSmithKline's program Bridges to Access to see if you qualify for free Mepron.
If so, it takes one phone call from your doc, and a scrip - and they will supply up to a year of Mepron.
If you don't qualify for that one, call them directly because they have other programs to help people who have insurance that doesn't completely cover the cost of expensive meds.
Hope this helps!
Posted by Dekrator48 (Member # 18239) on :
Cactus,
Thanks for all your suggestions!
I don't qualify for the Bridges to Access program but I will call them to see if they can offer any other help...I appreciate the idea.
Posted by tick battler (Member # 21113) on :
It does sound like she could have babesia with those symptoms. Does she have night sweats at all?
There are three herbal protocols to consider: 1. zhang (Can go to his website and fill out a survey and get a free 15 minute consult with him) 2. Buhner (Get the book Healing Lyme) 3. Cowden
Some have done very well on these. I have only tried Zhang and did see some slight improvements on it but only did it two separate times for 3 months.
Another option while you are waiting to get her to an LLMD is to get some testing done. Low ferritin levels or anemia might indicate babesia too. Also you could get the babesia FISH and WA-1 and lyme tests done through Igenex. But I think labcorp or Quest can do them too...my husband's only positive babs test showed up on Quest!
Good luck.
tickbattler
Posted by cactus (Member # 7347) on :
Oh - one more idea, along tickbattler's lines...
How is her Vit D level? That might be one to check, too.
...My overwhelming, mind-numbing fatigue only truly disappeared once my LLMD recognized that I have adrenal issues caused by Lyme and co, as well.
Maybe something along the lines of adrenal support could help, too.
Posted by Dekrator48 (Member # 18239) on :
tickbattler,
Thanks for all the suggestions.
She is Igenex positive for lyme but hasn't had coinfection testing yet.
No night sweats, but she is usually hot when I am always cold. She has the migraines, severe fatigue and cognitive problems.
She has the insomnia with the racing mind at night, which some may not associate with babesia, but my LLMD seems to think it is associated with babesia.
I'll have to investigate those protocols, thanks!
Posted by Dekrator48 (Member # 18239) on :
cactus,
I did take her some Vit D today and told her to get some sun everyday when possible.
What do you think is the best product for adrenal support?
Thanks for your help!
Posted by cactus (Member # 7347) on :
Dekrator, if she has a regular doc - she can have her Vit D levels tested.
Many, many seem to be low in Vit D these days - Lyme or no Lyme.
If her levels are very low - the doc might Rx a booster with a high dose of Vit D to take weekly, plus tell her to supplement daily.
I prefer Vit D3, by the way - but any Vit D is going to help, if she needs it.
Not sure - but this might be one you should exercise caution with, so as not to OD on Vit D.
As for adrenal support - there are some natural options to explore. I'm sorry I don't know enough about those - but a search here should help.
My LLMD started with a 24 hour saliva test through Diagnos-Techs - which is where we first realized that my cortisol levels were almost non-existent.
After that we moved to bloodwork, and other tests - and now I take hydrocortisone and fludricortisone, both Rx.
But there are more options out there, and hopefully your daughter does not have full-blown adrenal insufficiency, but rather if adrenals are an issue they just need some support while she heals and they get back to functioning well again.
I remember so well being unable to function due to fatigue - more so than the pain.
It made it so hard to be a mommy, and do all the things I needed to do. I'd not have made it through it all without the help of my own mom.
Your daughter is fortunate to have you in her corner.
Posted by Veromia (Member # 22031) on :
Take a look at this serrapeptase.
One bottle of 90,000 unit doses , when taking one a day in the morning on empty stomach can last you 3 months for like 50 dollars .
Serrapeptase will be new wave in the US soon although it has been around in Europe a while scroll down on this site for the info recomended by my llmd
helps pain, energy, helps breakdown biofilms, it is something amazing to really look at read up on a multifaceted natural enzyme, becoming essential
She has a good PCP, but she is on maternity leave.
When she returns, my daughter can talk to her about her hormones, adrenals, etc.
Thanks for all the suggestions!!!
Veromia,
Know anyone who has tried this?
Thanks for the info!
Posted by PB4 (Member # 20799) on :
Veromia- Cowden Protocol uses Serrapeptase. They say that it breaks down the outer coating of the cysts so the herbs can do their job.
Posted by Robin123 (Member # 9197) on :
Hi - what about magnesium and malic acid? Those two together gave me a lot of energy.
Posted by Dekrator48 (Member # 18239) on :
PB4,
Interesting! Thanks.
Robin,
I will check those out...thanks alot!!
Posted by aklnwlf (Member # 5960) on :
One of my worst symptoms was the fatigue also. My LLMD did the saliva test and I did topical alternative hormone replacement, supplements, etc.
Nothing helped.
Finally my regular GP sent me to an endocrinologist and I had very specific bloodwork done.
My main problem was very low HGH which affected my other hormones.
I am diagnosed with pituitary problems caused from either an accident or the Lyme.
I've been on HGH injections for over a year now and am able to walk regularly and do yardwork.
Sometimes I'm outside working for a couple hours hard labor.
Also my insomnia was linked to the low HGH. I'm sleeping better too.
Supplements, topical hormone replacement, etc. will not help this condition if severe.
Oh, another symptom was I started to have fewer periods and then they stopped completely.
If she has similar issues send her to an endo.
Posted by just don (Member # 1129) on :
I take Mag,calcium and glucosamine/clondritin for arthritis.
I found out by accident that kelp helps my fatigue and gives me energy. My bottle ran dry and I was without for awhile,,,right back to same old no energy.
But MY body doesnt hold salt very well. and I switched to sea salt a while back so a VERY special person on this forum sent me a link to iodine def.
The problem is excess iodine is just as bad as not enough.
But kelp is a great natural way of 'trying' to see if it helps. I can tell in a couple days a great difference.
Thanks for all you do ,Dekrator48,on the q&a section of that other lyme support site!!! My registration seems to not work any more. YOU make a difference over there!!!
Posted by Dekrator48 (Member # 18239) on :
aklnwlf,
Thank you for that information!
I will tell my daughter what you said.
just don,
Thanks for your input! That is interesting about the salt and the kelp!
Also, thank you for the pat on the back today!
I am happy that several people on the FMS/CFS site did discover they have lyme in the last 6 months or so....not that I'm happy they have lyme....but that they are getting answers finally......and hope.
That lyme board certainly is a slow one...everyone is here!
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