Back from LLMD need ADVICE

I'm sorry you're frustrated, Huddie. I've felt that way after my LLND appointments before and it's not a good feeling.

Honestly, I think skiing is a bit too much for your son...with the fatigue he is experiencing. Some light exercise might be in order...if he can tolerate it. But, skiing is usually a whole day event...when I was healthy and quite fit AND younger, I was always 'spent' by the end of the day.

I know you wanted the LLMD to back up your thoughts about your son staying out of school...and are not happy about what he said....what does your son say about going back to school?

You could be relapsing from not treating...but people DO heal with the herbal protocols. How long have you been off all treatments?

(((hugs)))

Skiing - no way. It is so demanding. Not only that you need concentration, but also it puts a great amount of stress on joints and Lyme always attack there. Don't let your son ski, it is too early.
Going back to school - I think that you need to talk to your son about this. Does he think he would be able to do it or not? It is a good thing because of friends and socializing. However, the most important is that he recovers.

Don't cry. Sending hugs to you

Have you tried full Buhner's protocol?

Huddie I agree with regard to the EBV and fatigue. It may be time for you to visit that other LLMD that you received a referral to from someone on the forum (I think jennydancingfish).

I think that the homeopathic is more than likely stirring things up in your brain. Maybe take a break from it or reduce the amount.

It will be ok. I do think however that you should add in perhaps a tiny amount of a killing herb. Another herb that I started that is great for the immune system and is excellent for a number of things is lomatium. I honestly learned about it (Buhner mentions it),some time ago but decided not to try it. But then I was reading more about it especially about chronic Epstein Barr and chronic fatigue. One of my docs used it.

I have been corresponding with Jane at barlowherbals. She's great. Her dad started the company and he has had her on it since she was little. She used it with her kids and she gives it to her grandkids.

She also has some videos on YouTube.

Krimpet,

You are a sweetie. Thank you.

I am contacting the other LLMD from Jenny tomorrow. I agree, I really need a second opinion at this point.

I am going to stop the homeopathic remedy and see if the pain eases up. I also don't like taking something, not knowing the exact ingredients.

Thank you for the lomatium suggestion. I will order. Is it a killing herb?

I tried JK but didn't do well on it. Buhner suggests Stephania in its place, that is why I have been on that.

It was suggested that I rebuild/support immunity before adding in the killing herbs, but I guess it's time now.

I have an appt. scheduled for next week with a guy from Dragon Botanicals. Took me few months to get the appointment so may keep it. I will call Barlow and see how long their wait time is.

Thank you Krimpet!

Remember, Huddie - this one moment in time isn't the 'be-all and end-all'.

You will get through this...whether it is changing LLMD's...or your son just saying he is too tired to ski...or whatever else happens.

It seems like there isn't an 'answer' right now...but there is...and you will work through it...and come out on top.


Don't worry. It will be okay.

Girlie,

Thanks for your kind words and encouragement.

I know it's not everything I just feel that my husband now heard it as 'all systems go' - you are right. So he ski's one day and is down for three. My husband will get it then. Maybe...

Or if my son goes to school and gets worse, my husband will see. He has to see things to believe them. He is THAT guy.

We are complete opposites in just about every way.

Hi Huddie!

Big hug!

My son hasn't been to school since last nov/dec. he has missed half of grade nine and half of grade 10. He has been getting treatment since Aug 4 and is just now feeling a little better.

Missing school has been hard and the isolation has been tough. He had migraines and couldn't carry on a conversation even if a friend contacted him. He couldn't walk in July/Aug.

Just this month he is able to reach out to other people and not have so much brain fog that he can communicate and be happy.

You and Your son will get through this!! I think skiing would be way too much exertion. Burrascano I think only recommends light weights no cardio when reconditioning.

FWIW I kind of think your son's sx sound like Bab with the skin burning and petechiae.

Did you ever try Beyond Balance Bab 2? My son took it for four months.

My son did two months doxy /azithro and then azithro. He had a terrible reaction to rifampin but is using Artesunate right now. I started him on Japanese Knotweed early December very slowly. Yesterday I started him on uncaria rhyncophylla -chinese cats claw to maybe help with remaining brain fog. He also takes quercitin, eleuthero, ashwaganda and a detox tea.

I will gradually introduce sida acuta and houttunyia for bartonella but worry about the herxing that will come.

Please please hang in there. You know how this disease is -every day a new and awful symptom. You are a wonderful mother and you are going in the right direction. Six months off of school wont be so bad and instead of him getting ready and taking the bus and dealing with other students he can rest, eat well , herx at home, gentle exercise and study.

It might be better for him to be at home anyway because my son said he felt like a zombie at school and wasn't making any sense. He thinks Other kids thought he was weird/incommunicative. Better to sit it out and come back strong.

My son will have to repeat a bunch of courses but that means just less fluff courses. I try to look at the big picture.

I worry about you. Did you try any of the beyond balance herbs? Did you try Doxy just to get your bacterial load down? My son had a brutal 3 week herx but felt so much better initially. How about a very mild chronic tonic ala Traveler? Just start with one drop in a mug?

Anyway I know I'm rambling. Sorry. Big hug again. And sending out healing prayers and thoughts for you.

Huddie - listening and caring - what a gnarly roller coaster ride! Cats claw is a good killing herb as is houttuynia...not sure why my intuition whispered bart in relation to some of your symptoms...

Hello Huddie,

I am so sorry you had that experience with that LLMD. Reading other people's suggestions it might help to speak to another doctor. I am contemplating myself to seek another doctor as mine goes full on antibiotics with no additional help. I learned to detox and about herbs/BVT/oils from people on this forum. I hope you feel better tomorrow. Sending good wishes to you and your family

Huddie, doctors don't say the right things sometimes. I am so sorry you LLMD was not more agreeable to your line of thinking.

I agree that skiing is not "gentle exercise" used for detoxing. Just walking around the perimeter of the outside of the house is what I did when I was first diagnosed. That was all I could do.

As for you, sweetie you really need to treat yourself or how are you going to hold down the fort for hubby and son?

If you can't do the herbs, you need to do the abx.

I have tried to spur you on with showing you my husband's aggressive treatment and detox schedule. I can email it to you again, if you would like. It is the only way to keep his symptoms down is to treat and stay on top of it constantly. It is a full time job and frustrating as all get out for him. But, it is treat or have symptoms and the longer you do without treatment the more symptoms pop up.

Sorry it was a cruddy day..... I hope a nice warm tub, some tea and a good night's sleep and you can all take another look at the situation tomorrow. <3

I dream of pizza too...but my vote is go for day trip skiing ...live life while able ...i missed chances to dance last year and wish i had ....

breath some good ass prana as ralph smart says ..pray meditate and think about it ...remember a surgeon will use a knife ,a witchdoctor folk medicine a llmd only has a prescription pad...think of how undudated he must be in a endemic place like nyc ....not saying give him grace but hey he is trying to try..

have you given thought to zhang or dr f ? I would say homeschool if your brain was working ..jk ..it may help keep pathways open ...

go for drive maybe sleding or intertubing (we cant afford toboggins )
Dont think about lyme for a day and clarity will come ....

i said whats good for goose is good for gander ...
if you arent willing to take med y should he ?

Do you have a real plasma rife machine ?
If you arent willing to do abx then do you have hootspa or funds to do mhbot ,bvt ,or all herbals ...
not making a choice os a choice too...

so my counseler friend with chronic lyme had extreme tachycadia at 17yo ..got a central lone did 1 yr of iv abx with dr martz (als) and told me when i was crying about port for 2 months ..i was in analysis paralysis...she was right ...rocephin and bvt is the onlything to offer relief. ..

nobody can make choice for you you may be right you may be wrong ...i still have gallbladder yay..some dont ...i have only had a few herbal reactions ...as girlie said casualties of war ...this goes for a few people here and myself ..to quote zoey on firefly "talking aint doing "

Bartonella can be lethal, babesia can be debilitating ,borrielia can kill and disable ...i wish sometimes i had not known...believed the bs dx of als and let it take me in 2-5years ..but i didnt ..i must shout of my healing when it comes ..turn the light on the darkness...and you will do the same huddie ...you are a light ...burn baby burn

Thank you all. I have read all of these thoughtful and generous replies. I appreciate everyone of them.

I did not sleep at all last night. The stress and worry of my son returning to school and skiing was overwhelming. I feel all the good headway I made it being undone.

My husband thinks the boards are crazy (the sickest of all the people that exist) and it is possible for him to heal if the doctor thinks so!

OMG he has had lyme since 7 and has been in treatment for eight weeks - and is listless and ill. My husband believes it it's all the meds and we will see how much better he is when he stops.

My entire body is in pain today - arms, legs, heads, arm pits, if anyone is in doubt that stress causes symptoms, I am proof that it absolutely does.

Thanks Peteza, for the offer to send your husbands list. Sure I'll take it. I'm not trying to be a bad 'patient' I honestly herx on one drop of herbs - to the point where I need to stay in an lay down all day. I'm a type A/OCD type of person - I don't sit down let alone lay down so it's not me being lazy.

I'm highly sensitive. Believe me if anyone wishes to down copious amounts of healing herbs it is me.

I'm calling LLMD this morning and will try and get it today for a re-do. Also, he never ordered any tests for my son to check markers like EBV, WBC, liver... I feel like he was just so different because my husband was at appointment.

Lymemomster, you are NEVER rambling. I really like and need to hear your story and how it is for these teens.

Bluelyme, you are correct. I know I have to get busy healing. I don't have a rife. I do have probably every herb necessary to kill these bugs. I get frozen and honestly was preoccupied with holiday/son.