Heart issues?

Yes, the sauna is great - we often have a lower body temperature and apparently that's what lyme likes. So heating up in the sauna is good, along with sweating...we get rid of toxins through the skin..so that is really good!

He should be drinking 8 glasses of water daily...and squeeze fresh (organic if possible) lemon juice into some of the glasses. This can be hard on the tooth enamel, so it's best to drink through a straw...and also don't brush teeth right after drinking lemon water.

I also do warm epsom salt baths - I do about 4 per week...more when I'm herxing.

Is Zach on liver supplementation? Milk thistle seed extract is good for the liver. We need to keep the liver healthy as it is a toxin filter.

Also, lots of probiotics - daily. Need to keep our gut healthy.

That's a few ideas. If you've already posted previously that he's doing some of this...sorry...I may have forgot.

Now - will he agree to doing this?

ACE, wow! My son used to tell me he felt his heart was STOPPING and that feeling would wake him out of a dead sleep! How frightening. And how ridiculous that the traditional medical establishment doesn't believe this is real!!

does anyone have (or had) the indescribable head sensations? the best way I can describe it is a constant 'fullness' or 'heaviness' in the head and the feeling of being 'detached'? I can't describe it as I've never felt it before but it was probably THE worst symptom I had; it was constant and really uncomfortable at times and it came with head aches or pressure. It was the worst thing ever....

ACE- my son has had no ongoing issues with headaches. He will get a headache if he eats a banana. Anything starchy or sweet will bring on symptoms. Rice will give him a racing heart. Apple will make his hands hurt even more than they already do.

MAUIHAWAII- my son *usually* feels awful after exercise...almost like a herx. He knows he is supposed to exercise and the LLMD always emphasizes this at each appointment but he does not exercise everyday. He is extremely lethargic. Like he is dragginggggg through his days. I agree that exercise is essential to healing, but I don't know what to do. I work 7 days a week and also 4 overnights a week (I do home care) to help keep up with the astronomical cost of fighting this disease since his insurance (a platinum plan through Obamacare) does not cover anything, except for some of the blood tests he gets done and oral antibiotics.

His iv doxycycline was not covered ($318 for 12 doses for the month as he is getting it 3 x/week)..the iv infusion appts which include treadmill while breathing oxygen prior to the infusion, the infusion itself and then infrared sauna for 45 min afterward is $190 each time ($570/week, $2,280 total for the 4 weeks of treatment), his LLMD appts total $470 during these 4 weeks. His supplements cost $500/month (and that's with even buying the cheaper or other brands off Amazon).So for these 4 weeks alone totals $3,568.00. If I worked at Walmart or McDonald's my kid would not be ALIVE right now. This is a FACT. Even he would tell you this! Yes it's expensive but what else can I do? My husband remarked a while back, "At this rate we are never going to own our own home or save for retirement." I told him, "The sooner you accept that idea and get used to it the better off you'll be."

I thank God EVERYDAY for giving me enough work to help pay for the cost of my son's care. He was bedridden by the time we'd gotten to the LLMD and his heart was STOPPING. Thank goodness my husband works from home (my son's stepfather), as he is doing his best through programmed alarms and alerts on his own cell phone to keep my son on schedule with his probiotics, oral antibiotc (Flagyl), supplements, meals. I shudder to think what would become of my son had he not the unwavering support, financially and emotionally, of his family.

Which then makes me wonder how does anybody else fighting this disease with no acknowledgment from the traditional medical establishment or coverage from insurance, cope? We are hanging by a thread here! If I lose a client God Forbid, we are a heartbeat (literally) from losing the ability to keep up with this. I pray fervently EVERY DAY that God helps me keep helping my boy. My son's father (my ex husband of 13 yrs) passed away 5 yrs ago in this month...he'd be rolling in his grave if he could see what his boy has been through!

Wow Traveler that's terrible there is no one in your state! My son is exercising right now three times a week, only because that's part of his iv antibiotic treatment. (On his own at home he would not be doing it at this point, he is realllly pushing himself at these infusion appts). His LLMD has him going on the treadmill for 20 min while breathing in oxygen through an oxygen mask, to increase blood flow and maximize oxygen level in his blood prior to the iv infusion. Then 45 min in the sauna at 130 degree right after the infusion. So far, my son is saying that he is not experiencing any decrease in the pain in his hands from this treatment. Lethargy remains the same. I keep telling him to hang in there, he still has two more weeks of treatment to go and let's see if that helps. He saw Infectious Diseases again this week (on Tuesday) for a follow up to the ultrasound he had of the soft tissue of his head and neck, due to swollen lymphs. The doctor said the ultra sound showed increased blood flow to the thyroid but that he does not have lymphoma (thank Goodness) according to the bloodwork that was done and the images taken of that area. When I suggested that perhaps the iv doxycycline might help the swelling of his lymph nodes, he looked at my son and said, "Stop taking the iv doxycycline, you do not have lyme disease". I felt so bad for my son! So I asked the doctor, "So are you telling me that the fact my son's health went straight downhill after getting bitten by the tick, is a pure coincidence and the two events are unrelated?" and he replied, "yes, the tick bite is a red herring, just ignore it" !!!?!?!?!?!?!?!?!?!?! He lost about 99% of his credibility with me after that dumb@ss remark!!! My son and I felt like we were in The Twilight Zone. The doctor downplayed the reality of the misery of Lyme and co-infections to the fullest extent possible. I'm sorry but has there not been ONE doctor like him who once felt the same way he does who then got Lyme themselves and changed their tune and convinced any of their ignorant peers of The Truth?!?!?!?! Not ONE?!?!? ...so then my son saw a rheumatologist on Thursday. She was really nice and actually seemed a lot more opened minded about Lyme and it's devastating health consequences for some people, including her own patients. She told my son that she doesn't believe that the chronic pain in my son's hands is due to RA. She said mainly because his initial blood work gives no indication of RA...but she had more blood tests done to rule it out completely, and said she is just doing that to be extra thorough but knows he really doesn't have RA. She said especially since because my son's joint pain in his hands includes the very first joint in the top of each of his fingers - and that joint is not involved when it's Rheumatoid Arthritis. So she said that right there says to her that it's not RA. She thinks it's the Lyme and that hopefully further treatment of Lyme will make that pain go away. I was blown away by the fact she actually acknowledged that...meanwhile remember two days earlier the infectious diseases doc looked my son in the eye and told him he does NOT have Lyme. I feel so bad for everyone going through this nightmare!!! What a horrible club to belong to!

Post Edited (zachsmom) : 8/8/2015 6:14:17 AM (GMT-6)

I wish I had a happy update to report. But I don't. My son was approved for disability in Dec 2015. He was ill enough during the appointment that the social security doctor didn't even TRY to deny him approval. Last summer he tried IV antibiotics (doxycycline) and he tried Myers Cocktail IV infusions with glutathione push afterward. He did treadmill while breathing oxygen and then cooking in the sauna on 130 degrees for 45 min 3 times a week. Kept taking probiotics (Orthobiotics, Sacchro B & Enterogenic) twice a day...went on a supplement and drug 'holiday' and by Jan or Feb this year (2016) was noticing tremors in his hands. Is presently doing Myers Cocktails again with glutathione via IV in an attempt to boost his immune system before resorting to more antibiotics. The Chronic Fatigue is UNREAL. The lack of zest for life, the prime of his life taken from him since age 19 in 2013. Still has extreme food sensitivities, that can cause cardiac & breathing issues....still has fear of being far from home or going out much with the exception to doctor's appointments or grocery store 2 miles away. Chronic pain in hands persists, along with the popping of the joints. Shooting pains in the eyes (has been off plaquenil for months and got the all clear from neuro-opthalmologist thank God), liver enzymes high (leukopenia), Lymphoma was RULED OUT THANK GOODNESS! The out of pocket expense is criminal and yet I am grateful for his LLMD - I shudder to think where my son would be without his LLMD!!!!! Insurance companies are EVIL for not covering treatment for Lyme Patients!!!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

Hi Traveler, I love your suggestions. And I went to the surviving mold website and ordered the vision acuity tests for our family. I will post the results on this forum when we get them back. My son has been having Myers Cocktails and CoQ10 shots each week for the past month. He had developed tremors about 5 months ago and they have gotten worse. We were hoping the Myers Cocktails would help boost his immune system and improve the tremors but it hasn't. He has finally been approved for medical marijuana, so we are realllly hoping this helps him turn the corner. I wouldn't wish this hell on ANYONE!!! I believe mold could be preventing his recovery too. You are on point with that suggestion. I guess I wasn't giving it much credence but now I have to definitely rule it out. So many people are talking about mold being an issue or roadblock to recovery, I must investigate it. We spent over 30k on out of pocket medical costs last year. How can people cope with the insane cost of fighting this disease when insurance doesn't pay? I am surprised we still have our heads above water. Totally insane and criminal what families of Lyme sufferers go through. As if the patient's suffering caused by traditional medical establishment's ignorance, arrogance and complacency isn't enough, the financial toll is just rubbing salt into an already pretty horrendous wound. I will post my assessment of how the medical marijuana helps..or doesn't help. I'm choosing to remain optimistic. Have heard/read stories of those who say it saved them and put them in remission. Have also heard some say it did nada. My hubby and I drove to Vermont yesterday to send out my boy's stool sample to be tested for parasites. I guess it couldn't be sent from NY for some reason-weird! So we made the drive. I am highly interested in learning what they find!! We are not leaving a stone unturned over here! I can't give up on my boy - not while there is breath in me! Sending love to all reading this!

Zachsmom, your son is a very lucky person to have you on his side!! My Mom had no clue that the doctors really didn't know what they were talking about when they told her I was fine, so I was left to learn how to deal with these things on my own. That's a lot of the reason I've been on here for so long, to be of help to anyone I can be.

Keep searching - the answers are out there, we just have to finally get to the right questions and ask them of the right people. Hard to do unless you are determined to learn what you need to in order to heal, or in your case, help your son to heal.

We are all here to help you come up with whatever information we can to help you in your search!
Best wishes!!!!

Update folks - I took your advice and he is now detoxing - slowly - under the guidance of a Naturopath that my son's LLMD referred him to within his practice. My son saw her for the 2nd time yesterday. She had him stop taking magnesium citrate capsules (he was taking 1000mg daily split up in two doses, one 400mg am and 600mg in pm).

He is now to take WITH MEALS:
Natural Calm (magnesium in powder form), he is to take 2 tsp in water once daily in the evening but IF his heart palpitations return he is to increase to 2 tsp 2x a day. He is to discontinue the powder magnesium only if loose stools develop, at which point he will go back to Magnesium citrate capsules. Also he is to take with his evening meal Vitamin D 5000 IU w/Vitamin K 45 mcg. Pure Encapsulations - ADR Formula ONE capsule in the morning (for adrenal fatigue & to address his wacky cortisol levels).

He is to TAKE BETWEEN MEALS:
* TILIA - 1/2 tsp in a little water 2x daily (a.m. and p.m.)
* HOLD UNDA #1,2, 20 (which he was prescribed at his previous appointment with the Naturopath) Take 5 drops of each 3x daily at least 10 min away from food. Formulas will run out in 3 - 4 weeks at this dose. Finish this dose; do not refill before his next visit with the Naturopath. Can be taken directly on tongue or put in a little water.
* BEGIN UNDA #'s 9. 41. 202. Take 5 drops of each 3x daily at least 10 min away from food.
* SURRENINUM (9CH): Dissolve 4 pellets under the tongue once daily on Monday and Friday evening. Take a least 10 min away from food/drink.
* INSOMNITOL - 2 capsules 30 min before bedtime (take at 10:30pm) as needed for sleep support
* SERIPHOS - 1 capsule at bedtime. As needed for sleep support

WATER - Drink 1/2 body weight in ounces daily, between meals.
SLEEP - To bed by 10-11pm. Sleep in a completely dark room. Turn off electronics 1 hr prior to bedtime.
CASTOR OIL PACK - 45 min daily or overnight. Apply to abdomen 4x weekly (consecutive days). See handout.
HYDROTHERAPY - Epsom salt baths 3x weekly. On NON-SAUNA days. Add 3 - 4 cups of PLAIN epsom salts to warm bath water. Soak for 20 min.
WALK DAILY for 30 to 60 min. Preferably outside - take in the fresh air. During the day, NOT AT NIGHT, too stimulating!

DIET INSTRUCTIONS:
Pure Paleo Protein (Unflavored, Unsweetened): 1 scoop in beverage of choice once daily
Add seaweed into diet: Consider seaweed snack or dulse flakes

FYI my son was approved for Medical Marijuana. He tried the vape form and tinctures, both the balance 1:1 ratio of CBD to THC and the higher THC to CBD. It did NOTHING to help reduce his tremors in his hands. It did not seem to help with his pain. It has helped (a little) with his sleep. I told him to keep at least doing the tinctures since studies seem to support that cannabis kills bad cells while protecting the healthy cells, supporting the immune system. We have SPENT A FORTUNE ON THIS!!!!!!!!!!!!

Oh my gosh how sad for you son and how stressful for a Mom to watch.

I love the approach the naturopath has taken and I sure hope it is the answer.

Prayers being said here in my home.

Thank you for updating us, Zachsmom! I'm so sorry, I know how hard this is for a young person to go through!! And, you're right! You never know who might need to read this!!!

Has he been evaluated for leaky gut as well? That too would explain the many food sensitivities, as the "chemicals" (sorry, can't think of the right word!!) from the food he eats passes through the intestinal walls and causes inflammation and more.