Hi All, I am new to this support group thing so please bear with me if I make errors in etiquette or proper protocol.
I was diagnosed with Lyme for the 4th time in July. After 3 weeks of Doxy, 10 days of Aryth, and 7 days of Ceph, I still am really exhausted and my neck really hurts. I have also since had a bout with a sinus infection, Migraines and Bronchitis, all of which created multi-drug interactions and generally ill feelings. So I have just about had it with doctors and drugs.
Are there any all natural supplements I can take to boost my energy? I have been finding it really difficult sleep 10+ hours a day and still work.
Posted by Razzle (Member # 30398) on :
NADH Vitamin D3 (cholecalciferol) B-Complex Vitamins (especially Vitamin B12 and Pantothenic Acid (Vit. B5)) Magnesium (needed for many things in the body)
Posted by Carol in PA (Member # 5338) on :
What are you doing for liver support? Neurotoxins left behind by the dead Lyme bacteria cause headaches, fatigue and other problems.
Liver support means providing the things the liver needs to make glutathione.
The liver uses glutathione to detoxify these poisons, which cause many of the Lyme symptoms.
Magnesium and fish oil will help to reduce inflammation, which will help reduce your symptoms.
Posted by nefferdun (Member # 20157) on :
You might also be infected with babesia. It makes you extremely exhausted and sleepy. The drugs you are on won't affect it much. I tried many supplements and only treating the right infections helped my symptoms.
But Acetyl L Carnitine with Alpha Lipoic Acid is good for boosting energy. The carnitine helps convert fat to muscle and improves stamina. The lipoic acid is a powerful antioxidant and detoxer.
Welcome, by the way!
Posted by Lisa Lyme (Member # 33537) on :
Thanks all for the quick replies.
I tested Neg. for Babesia and Erlichia. But, did not consider the liver and detox issues, only the probiotic stuff. I will hopefully get a pay check soon so I can get to the health food store for the recommended suppliments.
It's nice to have a place to ask questions and voice concerns. I'm not alone anymore:)!
Posted by sixgoofykids (Member # 11141) on :
Are you still treating? You likely still have the infection if you're still having symptoms.
Posted by pamoisondelune (Member # 11846) on :
You can test negative for babesia but have it anyway.
Rhodiola and Eleutherococcus (Siberian ginseng),also called Eleuthero, are also for energy.
Chlorella might help.
Posted by Lisa Lyme (Member # 33537) on :
I am NOT currently being treated. After 5 weeks abx and many drug interaction problems and trips to the ER I have chosen not to return to my DR till my cold/sinus infection/bronchitus goes away.
Also, I have no money for co-pays and drugs right now.
Posted by lpkayak (Member # 5230) on :
"Are you still treating? You likely still have the infection if you're still having symptoms."
ditto
u were very under txed
some drug interactions can be handled
coinfect testing is very unreliable
get to a good llmd or real ALOT on here if you really hope to tx yourself
if not you may end up chronic like many of us
Posted by canefan17 (Member # 22149) on :
Eleutheroccocus
Herb Pharm brand
Posted by klutzo (Member # 5701) on :
D-Ribose with Acetyl-L-carnitine did wonders for my energy level.
I agree you were undertreated. You don't want to end up unable to work at all for 25 yrs, like me. See a good LLMD, even if you have to borrow, IMO.
klutzo
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lisa Lyme: I am NOT currently being treated. After 5 weeks abx and many drug interaction problems and trips to the ER I have chosen not to return to my DR till my cold/sinus infection/bronchitus goes away.
Also, I have no money for co-pays and drugs right now.
It's very common to feel worse when you start treating. It's called a herxheimer reaction. You WILL get worse before you get better. It's the nature of Lyme Disease.
Your sinus infection/bronchitis may be part of the infection. It's also unlikely you'll get rid of the fatigue without adequate treatment of the disease. Fatigue is a huge symptom for most Lyme patients.
Five weeks of abx is a VERY, VERY short treatment duration for Lyme Disease. I was treated for THREE YEARS. One of those years was with alternative treatments.
Posted by missing (Member # 22437) on :
I wrote a long answer to your question, and then it disappeared.
If you search my name, and read my posts, you will read my journey.
I was an athelete that trained almost 40 hours per week, while holding down a full time job, and took care of house and family.
I was told that nothing was wrong with me.
I was ignored.
I had to quit in the middle of rehersals, (because I am also a preformer), because the pain had gotten so bad by then, and because of many other symptoms. One of my symptoms was Alzheimer's.
Don't ignore this disease until you end up like me with Alzheimer's and pain so bad that all you do is scream day and night.
I am in pain now, and have collapsed in bed, so I| thought I would just write you a reply.
please read my other posts about how this disease has ruined my life!
Posted by karenl (Member # 17753) on :
Missing just posted she also found mold in her house, so the problems are not only lyme or babs.
Posted by LSG Scott (Member # 21624) on :
the biggest suggestions i can make to fight he exhaustion is get your sleep in and take Acetyl L-carnitine 2000mlg a day and get sleep and more sleep insomnia slows down a lot of healing
Posted by lpkayak (Member # 5230) on :
six and missing are making excellent points here. i hope you can understand. we just dont want you to end up like us. NOW is the time you can make a difference
also resp infects are very often fungal and do not respond to abx and need antifungals
Posted by Robin123 (Member # 9197) on :
When I didn't know I had Lyme, I recall that taking Swedish flower pollen gave me energy.
Posted by sixgoofykids (Member # 11141) on :
It might make more sense to make a comparison to a disease you are more familiar with. Let's say you have strep throat. If you just look for throat lozengers, not only are they going to be a temporary relief only, but also the illness is going to grow and spread from ignoring it, so after time the throat lozengers will do less and less for you as you become sicker and sicker with the bacterial infection.
You can take herbs for the bacterial infection, but only focusing on the fatigue is not going to make you well. If it's a new infection, though, you want to hit it long and hard so you don't become chronic.
Posted by CherylSue (Member # 13077) on :
NT Factor
Famous Dr. B mentions it in his guidelines.
I think Researched Nutritionals puts it out. You need a doctor to call it in. Check online.
Posted by Lisa Lyme (Member # 33537) on :
Wow, I had no idea I was at such risk of undertreatment.
I do feel WAY better since the initial diagnosis and treatment and just thought I needed a little more boost to get back on my feet. The Doxy really kicked my butt. I have improved a lot, but still exhausted and have head/neck stiffness.
My PCP seemed to think that 5 weeks abx would do it. Should I ask for a re-test for comparison to my initial positive or just more Doxy (YUK)?
Posted by pamoisondelune (Member # 11846) on :
What was your DOSAGE of Doxy? It makes a big difference! How many milligrams per dose?
Have you read the ILADS Guildelines? The ILADS Lyme doctors recommend a higher dose than run-of-the-mill doctors use, because they consider the lower dose ineffective.
Then you also took Erythromycin and Cephtin (when you say Ceph, did you mean Ceftin?)
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lisa Lyme: Wow, I had no idea I was at such risk of undertreatment.
I do feel WAY better since the initial diagnosis and treatment and just thought I needed a little more boost to get back on my feet. The Doxy really kicked my butt. I have improved a lot, but still exhausted and have head/neck stiffness.
My PCP seemed to think that 5 weeks abx would do it. Should I ask for a re-test for comparison to my initial positive or just more Doxy (YUK)?
Check out the treatment guidelines at www.ilads.org , there is a lot of info there.
You also might want to watch Under Our Skin on Netflix or free on Hulu to learn more about Lyme Disease and why doctors tend to undertreat. Your PCP likely just doesn't know how long to treat and is trusting the IDSA guidelines.
Testing only shows that you have been exposed. There is no point in retesting as there is no test that can show whether the disease is still active as it's an antibody test, which shows that your immune system has fought it, nothing more. You can only tell if the disease is active by whether you have symptoms.
Posted by Lisa Lyme (Member # 33537) on :
quote:Originally posted by pamoisondelune: What was your DOSAGE of Doxy? It makes a big difference! How many milligrams per dose?
Have you read the ILADS Guildelines? The ILADS Lyme doctors recommend a higher dose than run-of-the-mill doctors use, because they consider the lower dose ineffective.
Then you also took Erythromycin and Cephtin (when you say Ceph, did you mean Ceftin?)
Posted by Lisa Lyme (Member # 33537) on :
OOPS, I did not add to my last post. I think it was 300mg Doxy 3xs a day, and yes it was Ceftin.
I did get the name of a semi-local LLMD, but she's not covered by my insurance and not taking new patients so I'll have to do some heavy praying.
Wish me luck!
Posted by pamoisondelune (Member # 11846) on :
300mg Doxy 3x/day sounds good to me!
I haven't read the guidelines since 6 years ago.
I took 400 mg Doxy 2x/day.
3 times a day sounds really awful!
Posted by Lisa Lyme (Member # 33537) on :
Yes, that much Doxy a day made me really nauseas, but I continued to work outside everyday as a landscaper, all thru Hot Hot July covered head to toe to keep the sun off me. I was really glad to be done with it.
Then, after 3 wks. I was still tired, so when I went back to my GP he said just wait and see if I improve because the Doxy side effects were really bad. I think I caught a cold in the waiting room, and that turned into a sinus infection a week later (more ABX), then into Bronchitis for 3 weeks after that.
Then one day at work I could not breathe so they took be to the ER (they said still bronchitis, new asthma, new allergies) and was given more ABX and steroids and a bunch of other stuff all of which had terrible complications leading to a wicked migraine and dehydration from excessive vomiting and another trip to the ER!
This time the ER DR said go off all meds and see what happens.
Now 2 wks later and several paychecks less I am still tired and have daily headaches and neck stiffness. I'm pretty sure if I ask my GP he will give me more Doxy, but I really don't want to do it unless it will REALLY make me better in the end.
Any continuing advise would be appreciated because you all seem to care so much. Thanks so much!
Posted by Lisa Lyme (Member # 33537) on :
Oh, we think I was bitten in May, began to feel a little ill just before Mother's day, but did not seek treatment till July 1st!
Posted by pamoisondelune (Member # 11846) on :
Don't take steroids; they're contraindicated for lyme, because they depress the immune system.
Posted by Lisa Lyme (Member # 33537) on :
Oh yeah that sucked, I quit those after 3 days and the last trip to the ER!
All I am taking now is probiotics and OTC pain relievers.
Posted by DolphinLady (Member # 6275) on :
The Biomat (thin infrared mat) is a medical device that supports the organs, detoxifies, boosts immunity, helps produce deep states of relaxation and increases energy and vitality.
It helped me achieve remission. Today it is a key part of keeping me well.
Posted by lymeinhell (Member # 4622) on :
NADH blasts oxygen into your cells (where it's needed) and lays the groundwork for your body to produce energy. Have to say that NADH is the best energy boost I've ever used.
![[Frown]](frown.gif)