IV Abx for my son? Need advice and knowledge

Hi guys,

My son is not healing. June 1 will start his 8th month of treatment.

In some ways he seems to be getting worse. He is constantly nauseous, can't be in a car, can't sit for too long, scared to go sleep, panic attacks.

Says throat feels watery all the time like there is water coming back up (acid reflux?)

Seems like he is on one big long herx. He just moans and complains non stop. It is awful on everyone.

Right now he is on Amoxy and Biaxin and supposed to go on Riamfin (sp?) in four weeks.

My husband thinks we need to get him on IV abx.

MY QUESTIONS:
1. What do IV abx entail. Is port put in (where and how) and then you go to DR office each week?

2. How much worse is this than orals, or is it better?

3. What do you have to have to get insurance to cover it?

Thanks.

Thank you Girlie!

What is the difference between port/picc line?

Has Pirouette done IV?

Do most people avoid because of the high concentration of abx (which wouldn't be good for my son) OR because of the cost?

I heard in some respects it helps becauses it bypasses stomach.

He has so many gut issues and they think it is h.pylori.

Hi Huddie -

I'm so sorry about the li'l guy - he has suffered enough.

I'll share everything I know about IV abx - just remember there are nuances for children and I'm pretty clueless what they might be.

I'm also not real sure what his history is - I know you've posted but there are so many people posting that I tend to get people confused - sorry! Anyway, I would love to troubleshoot with you, as I think IV would be better as a "last-resort" kind of decision for a child, but I understand you may already be there.

Within the following threads are posts I've made about IV installation, protocol and care, and cost info - it's a lot of detail but I find it helps people understand what they are getting into. Also, I wrote it a couple yrs ago and haven't updated it but should help start the conversation. Please let us know if you have q's.

To IV or not to IV:
www.healingwell.com/community/default.aspx?f=30&m=3674546

COST of IV:
www.healingwell.com/community/default.aspx?f=30&m=3665291&g=3665498#m3665498

-p

Huddie -

A few more thoughts:

The sx you mention in your original post also sound a little yeast/fungal -ish so that is one stone to look under.

Also, here is a list of "what else to explore" when the treatment and healing is not going anywhere... you might also explore to make sure none of these issues are bogging down his little body:

Not healing:
There are several trouble-shooting suggestions we talk about here for people who are not making progress with treatment. There is a LOT more to treatment and healing than taking antibacterial herbals/pharmaceuticals. Unfortunately, even some lyme specialists miss this very important part of our reality.

A few questions to ponder (I've copied and pasted this from previous post of mine so not all of this is going to apply to him but wanted to post as quickly as I could):

1. How well is your immune system functioning? Does it need healing time?
No amount of drugs or herbs or other treatment can heal you without the support of your immune system. What can you do to support it is key. A healthy gut is key (70% of your immune system lives in your GI tract) so DIET is HUGE, leaky gut is a major roadblock and has to be successfully overcome, tackling other drains on the immune system like a high viral load, fungal load, etc. are also very important.

Sometimes, it's OK to take a break and heal the gut so that it can do a better job of absorbing our oral treatments and taking care of infections:

www.thefooddoc.com/diagnoses/leaky_gut

www.healingwell.com/community/default.aspx?f=30&m=3294327

Bell's Palsy of the gut
www.lymenet.de/literatur/vtsherr_gut.htm

- gut dysbiosis that might also be affecting digestion and food/supplement absorption? See:
.................Bowel Disorders, Part I: about Gut Disease
perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/
.................Bowel Disorders, Part II: Healing the Gut By Eliminating Food Toxins
perfecthealthdiet.com/2010/07/bowel-disease-part-ii-healing-the-gut-by-eliminating-food-toxins/
.................Bowel Disorders, Part III: Healing Through Nutrition
perfecthealthdiet.com/2010/07/bowel-disease-part-iii-healing-through-nutrition/
.................Bowel Disorders, Part IV: Restoring Healthful Gut Flora
perfecthealthdiet.com/2010/07/bowel-disease-part-iv-restoring-healthful-gut-flora/


2. Do you also have other infections/or other loads creating additional burden on your immune system that is keeping it from functioning well?

- coinfections? You don't necessarily need to test for these - see: www.healingwell.com/community/default.aspx?f=30&m=3033860

- high viral load(s)? Google viral symptoms and also see: www.healingwell.com/community/default.aspx?f=30&m=3618192

- yeast/fungal overgrowth? See: www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275


3. Are you detoxing appropriately with effective and consistent protocols?
Often, you have to switch things up or try new ways of detoxing if you're in a stalemate. There are some really good conversations here about detoxing already - I like to try to hit the following categories in one way or another... it's not easy and takes even more time than the microbial treatment but in many ways, detoxing is more important than antimicrobial tx because your body needs to detox in more ways than just processing the tx.

GI
Detoxing in the GI - bowel movements are probably the most important detoxing in the gut - digestion is one of our natural detoxing mechanisms and if you are constipated, all those toxins are sitting in your intestines and with any damage to the mucosal lining (leaky gut, etc.) they are likely getting reabsorbed.
- I find that pure cholestyramine, while an EXCELLENT binder, has also made me more regular than I've ever been in my entire life... ask me if you'd like more info.
- I've also had success with drinking an 1/2c aloe vera juice + 2 T tart cherry juice cocktail (soothing and the tart cherry is a laxative).

LYMPH
Dry brushing before a detox soak is an excellent way to help move toxins through the circulatory system and to help clear out lymph nodes. Lots of info on the web.

LIVER
With lyme & co tx the liver really needs support - I have had a lot of success with milk thistle seed + burdock root (one wasn't enough for me and I was on abx AND antivirals AND antifungals at one time - the combo worked like a charm), adequate water is essential, and a safe, gentle liver cleanse might also be a good idea if you're strong enough.

SKIN
sweating/sauna and detox soaks are the best way to take advantage of our largest detox organ - our skin - to draw toxins out of the body. Lots of methods and recipes.

BRAIN
For psycho-neuro, cognitive functions I would try pinella and bur bur - they have been really great for me. Also, keeping digestion moving helps (remember the gut-brain connections) to eliminate toxins that might be reaching the brain. Addressing yeast/fungal overgrowth is also critical for brain health since they can create mycotoxins (literally, ethanol and acetaldehyde) that get into the brain - causing the fog and many other sx.


4. If you have implemented a solid detox program then you have to look at the context of your treatment and detoxing protocol.
Is your treatment too aggressive? There needs to be a balance between "treatment in (killing microbes) = detox out (getting rid of debris). You can also be detoxing more quickly than your body can process it. If that is out of balance, you will remain overloaded with toxins.


5. Is there a more dominant infection than the one you are treating?
The body is dynamic - ever changing and the treatment can cause a shift, the detoxing can cause a shift--so it's important to evaluate and recalibrate every now and then. This is why many LLMDs test for co-infections and pay close attention to any clinical cues in your symptoms for what to treat first but this is dynamic and may change over time.


6. Do you have functional problems detoxing due to DNA mutations or other health issues?
If you don't get around the detoxing and methylation issues, you'll never get the toxins out of your system faster than you're creating them with the treatment and the infection, which carries on until you suppress it. Other mutations (neurotransmitter, digestion, cardio, HPA axis/endocrine) can also hinder other body systems that will create conditions that contribute to not feeling well (for instance—neurotransmitter imbalances can contribute to depression, anxiety, crankiness). This is a bit of a maze that takes time to work through, as well - we've talked about it a lot but here is one conversation:
www.healingwell.com/community/default.aspx?f=30&m=3413587&g=3414439#m3414439


7. Biofilms
Biofilms can harbor nearly everything we're trying to treat. Some infections- and it's known that abx- can sometimes make biofilms worse. The component in the tick's saliva that causes the numbing effect can also generate biofilm growth. It's important to incorporate a good biofilm buster as you're moving through treatment - and don't go off any of the other components of the protocols while you're breaking up biofilms - so that whatever might get released can also be treated.

itsnotjustlyme.com/biofilm-myths-and-remedies/

www.bayarealyme.org/blog/straight-talk-biofilms-new-answer-treating-lyme-disease/

Please post questions and anything else you need help with.

-p

Post Edited (Pirouette) : 5/27/2017 3:44:39 PM (GMT-6)

I've been on IV abx for 7 months. Out of everything I've done, it has helped me the most.

1. IV abx will entail that you have a nurse to change your kid's bandage once per week if you get a PICC line. The first dose of an antibiotic should be done in the doctor's office because they will want to make sure your kid doesn't have a reaction. After that, you will be able to administer the IV abx to your kid while at home.

There are different delivery systems with IV abx; I prefer a ball pump which will deliver the medicine at the correct rate (as opposed to an IV bag that you hang from a pole) and you can still be mobile while you are getting dosed.

2. IV can be better than orals because you are putting them right into the bloodstream and not creating more gut stress. Once you get used to administering the IV abx, you will find that it is very easy. Most people use SASH method - saline, abx, saline, heparin.

3. I got insurance to cover my PICC line and one month of ABX (i still paid 1000 for the PICC line and 175 per week for abx with insurance coverage). Then I've paid for IV abx out of pocket after that (I recommend the Infuserve Pharmacy). There are a variety of ways to get insurance to pay. For BCBS, I had a positive iSPot test, had 1 year of oral abx and then had a second positive iSpot test....which proved to insurance that I failed oral abx. Some people proved encephalitis which helped get insurance coverage. Hopefully, your LLMD is well versed in this can help.

If you do get insurance coverage, have your LLMD order the most expensive drug - IV doxy or IV invantz. Other abx like ceftriaxone or azithro are reasonably priced and you could pay out of pocket for those once insurance coverage runs out.

It is my understanding, if a test for lyme or specific coinfections are positive, the insurance should cover it. For how long, not sure.

Also, insurance companies vary but they should cover it out of network. You may have to start over with a new deductible and out of pocket, but at least those limits should be met quickly.

BJD55 said...


Madison, do say more about getting bcbs to cover the cost. Is your plan a ppo or hmo? Was this Rx'd by a doctor on your plan or an llmd you pay out of pocket?

I had BCBS PPO. My lyme was diagnosed by a LLMD (well, technically an LL nurse practitioner). My LLNP accepted my BCBS insurance so my appointments were on a 20 dollar copay. My insurance changed this year....so now I pay out of pocket for a visit.

BJD55 said...


I'm still treating babesia primarily but fear iv abx may be in the cards further down the road. Hopefully not, with so much time on my hands, there's too much time for worry.

I've seen 3 insurance docs (pcp, 2 id specialists) who refused to treat me with an indeterminate igenex western blot, positive babesia fish, and positive bart ifa; negative Elisa & pcr from labcorp, quest, and arup for Bb, bab, and Bart.

Would my llmd, who is not on my blue shield hmo plan, be able to order picc, meds, and home health nursing services and it get covered by BS?

Your LLMD can order a PICC line, but it might not be covered under insurance unless you can prove that you need IV abx. Else you might have to pay cash. Your LLMD also has to have "privileges" at a hospital in order for the PICC line to be placed. My LLNP did not have privileges at a hospital that was my first choice.....so we had to switch.

Ordering IV meds is no different than ordering oral meds. You tell your LLMD what pharmacy you want to work with. The pharmacy will also send you all your PICC line supplies.

BCBS will not pay for a home health nurse unless you are bedridden. My friend who is a nurse did my bandage changes for me. Hopefully, you have a friend with some medical training that can do this for you....it's not difficult. I've changed my own bandage before with some help from my husband.

BJD55 said...

madisongrrl said...
I've been on IV abx for 7 months. Out of everything I've done, it has helped me the most.

1. IV abx will entail that you have a nurse to change your kid's bandage once per week if you get a PICC line. The first dose of an antibiotic should be done in the doctor's office because they will want to make sure your kid doesn't have a reaction. After that, you will be able to administer the IV abx to your kid while at home.

There are different delivery systems with IV abx; I prefer a ball pump which will deliver the medicine at the correct rate (as opposed to an IV bag that you hang from a pole) and you can still be mobile while you are getting dosed.

2. IV can be better than orals because you are putting them right into the bloodstream and not creating more gut stress. Once you get used to administering the IV abx, you will find that it is very easy. Most people use SASH method - saline, abx, saline, heparin.

3. I got insurance to cover my PICC line and one month of ABX (i still paid 1000 for the PICC line and 175 per week for abx with insurance coverage). Then I've paid for IV abx out of pocket after that (I recommend the Infuserve Pharmacy). There are a variety of ways to get insurance to pay. For BCBS, I had a positive iSPot test, had 1 year of oral abx and then had a second positive iSpot test....which proved to insurance that I failed oral abx. Some people proved encephalitis which helped get insurance coverage. Hopefully, your LLMD is well versed in this can help.

If you do get insurance coverage, have your LLMD order the most expensive drug - IV doxy or IV invantz. Other abx like ceftriaxone or azithro are reasonably priced and you could pay out of pocket for those once insurance coverage runs out.

HI Huddie, so sorry to hear your son is still suffering so terribly. My heart goes out to him and you all. I hope he sees a breakthrough soon!

Madison, do say more about getting bcbs to cover the cost. Is your plan a ppo or hmo? Was this Rx'd by a doctor on your plan or an llmd you pay out of pocket?

I'm still treating babesia primarily but fear iv abx may be in the cards further down the road. Hopefully not, with so much time on my hands, there's too much time for worry.

I've seen 3 insurance docs (pcp, 2 id specialists) who refused to treat me with an indeterminate igenex western blot, positive babesia fish, and positive bart ifa; negative Elisa & pcr from labcorp, quest, and arup for Bb, bab, and Bart.

Would my llmd, who is not on my blue shield hmo plan, be able to order picc, meds, and home health nursing services and it get covered by BS?

One last thing....with IV you need weekly labs taken - CBC and CMP.

Post Edited (madisongrrl) : 5/27/2017 9:12:51 PM (GMT-6)

Huddie I think that switching to iv antibiotics or herbal only is a good idea. It would almost completely bypass the stomach and the anxiety issues and any psychiatric issues should resolve rather rapidly. Make sure your son is tested for PANDAS too okay, is he on anything for h pylori? To be honest I think either route would be good for him, I love buhner for my symptoms it's very gentle but effective. You will find something that works it just takes time, we've noticed for example that for some reason the herbs are too gentle at this time for my twin and the antibiotics do a much better job of eradicating her symptoms. Keep us posted you will find your path ❤ and the be better by September date no offense to your husband is silly. Our body is well a human body not a robot it heals at its own pace, we can't really set a timeline on it, it's ready when it's ready :p

I got a port covered ..but have to pay out of pocket for home pump balls ..infuserve america will quote you a weekly price .iv roceph and zith was like 250 a week .pirouette has made detailed posts about port vs picc .

have you looked into plasma rife and zhang ?..iv abx did stop the searing joint pain in about 2 weeks .herxes were worth it .protect gallbladder with urisidol if you do ...

You guys are the absolute best. I have a lot of good information here.

This may seem out of left field but do you think testing him again to see titers will help at all?

His Lyme was never severe. His main symptoms before treatment began were mild anxiety that probably only I noticed, the swollen knees when he played sports, fatigue - and he would get run down easily.

JDF and Daisies, I know my husband's request is silly. I understand why he feels this way. My son has been home the entire year and we pay for private school. He is lonely with no social life. He has no friends because he switched schools and then was home. I think a lot of his issues are also emotional because he has been isolated.

I know two kids who go to school after a year of treatment (my son will be one year on November 1) and do ok, still missing more school but can function.

Not sure IV will be right for him right now.

Dr. R is pulsing and weekends off. I think I'm going to work on sealing gut, Jernigan protocol, acupuncture and the machines from the holistic practitioner and see what happens. I was awake all night and prayed about this.

Huddie, I just wanted to stop by and say how sorry I am about all of this, but please realize that healing simply can not be rushed - no matter who wants it, how badly they want it, or for what reasons. Healing simply takes as long as it takes.

Yang,

Thank you. When I mention (in some post) about knowing a boy who is back at school, it is your son I'm talking about.

Can you explain more about photon therapy? Definitely doing that.

Trav,

Hi. Yes I know there is no healed by date with Lyme. Wouldn't we all love that I just mean well enough to attend school, which both doctors think he will be. His school has already been forewarned that he may not have the best attendance. This is why he is repeating the grade.

June 1 will be his eight month of abx. Would you guys have him finish the next three weeks of current four week course then do herbs or just do herbs/alt therapy now? I think his gut must be healed first. THANKS.

Yang, did your son have gut issues to deal with?