If Someone is NOT getting WELL with Lyme Treatment

What seemed like a nightmare began in June of 2010, my son was having trouble walking, swollen knees and ankles, very tired, and generally not feeling well.  He was Lyme Disease positive and put on 28 days of antibiotics.  At the end of that first 28 days, he was worse than when he started the antibiotics… so the family physician put him on Prednisone to help with the swollen joints and pain.  On day 3 of Prednisone, the seizures began.

He was diagnosed with Lyme, Bartonella, RMSF, Ehrlichia, Babesia, Mycoplasma pneumonia, strep…

I can’t remember all the combo antibiotics he was on…  treating Babesia, Bartonella, and Lyme… and he continued to go downhill. He didn’t herx. He just got worse.

His LLMD said he has to go on IV, the orals just are not working. He got a picc line. IV rocephin… his WBC dove down. That’s when I noticed over the whole treatment period, his WBC had been dipping and his liver enzymes had been climbing. 45 days on the picc line his WBC was 0.8 – we pulled the picc line just before Christmas.

That’s when I found this video on HPU/KPU – Kryptopyrroluria (aka Hemopyrrollactamuria) – and the supporting slides for this presentation on HPU are here

A quote from my HPU research which had me excited about treating HPU successfully:
“Once all of the bodily systems are back online and functioning properly, a few months after introducing the HPU protocol, patients are essentially made invulnerable to Lyme disease, to molds, and even to heavy metals. Their bodies are now much better equipped to deal with these conditions when they have appropriate levels of zinc, biotin, manganese, vitamin B6, and arachidonic acid to support optimal functioning of numerous bodily processes.”

I felt that doing the HPU protocol – which we modified – keeping in mind that the end goal is to rid the body of toxic metals and allow the essential minerals to settle into the jobs they were meant to do — was KEY to healing from Lyme, coinfections and even helped in healing from mold illness – although getting a clean environment is VERY important too.

leukodyniaAt about 56:25 – Dr. Klinghardt goes over the slide titled Leukodynia with pictures of white spots on the fingernails.  He says:

“Called also Leukonychia, these white spots on the fingernails, they are present in about 60% of all HPU patients.  Please, if you don’t see them that doesn’t mean they don’t have it.  If they do have it, you don’t have to go any further with making a diagnosis of the zinc deficiency.”

He did have the white spots on his fingernails… and so did I.

“Interesting thing is, when someone has been lifelong zinc deficient and you actually give them zinc – this gets worse for a whole year.  Because the system wakes up in a different way and now fills in zinc levels in places that were completely substituted with cadmium, nickel, mercury, lead and the zinc goes into those places. And the person wakes up in a strange way where certain aspects of the zinc deficiency may get worse for the first 6 or 8 months.”

That was scary.  May get worse?

Ugh.  He was already so sick!

Practically every treatment warned of getting worse before getting better.  Treating HPU was no different. What a horrible way to heal.  I was really helped by changing my thinking to knowing that on the other side of pain is healing.  The body having pain from treatment is then easier to go through.  Pain sucks though.  Best not to have any!!

Some of the symptoms that HPU can cause:
Symptoms in bold are symptoms I was seeing in my (then) 11 year old son
* Poor Dream Recall
* Nail spots (Leukodynia)
* Poor breakfast appetite
* Stretch marks (striae)
* Pale skin, poor tanning
* Acne, allergy
* Constipation
* Eosinophilia
* Light, sound, odor intolerance
* Tremor, shaking, spasms
* Hypoglycemia, glucose intolerance
* Delayed puberty, impotence
* Anxiety / Nervousness
* Pessimism
* Depression
* Paranoia / Hallucinations
* Perceptual disorganization
* Obesity
* Course eyebrows
* Knee and joint pain
* Cold hands or feet
* Abdominal tenderness
* Mood swings
* Amenorrhea, irregular periods
* B6-responsive anemia
* Stress intolerance
* Emotional liability
* Explosive or episodic anger
* Poor short-term memory
* Crime and delinquency
* Substance abuse
* Attention Deficit / ADHD
* Autism
* Withdrawal
* Abnormal fat distribution

I asked our pediatrician to check some of the other markers  for HPU

(we ran the tests in bold type – which confirmed the need to treat for HPU)
*WBC < 5000/mcL (due to low levels of zinc)
*High LDL / Low HDL
*Low normal alkaline phosphatase(<60U/L)
*Low omega-6 fatty acids in red cell membrane test
*Low taurine in amino acid profile
*High MCV (size of red blood cells)
*WBC and RBC zinc and manganese levels may be normal while biopsies from bone and CNS are completely deficient
*Bone biopsies are a reliable predictor of HPU
*Severe deficiencies of zinc, manganese, lithium, calcium, magnesium, and molybdenum are often found

We did hair testing to check for levels of toxic metals and levels of essential minerals.

cullen hair toxic

Toxic Metals

Toxic metals were very high while essential minerals were very low – which helped us confirm we needed to treat HPU. The toxic metals are making the body toxic and pushing the essential minerals out of the cells making it impossible for the body to work properly.

cullen hair essential

Essential minerals

HPU is a major factor in people not getting well from chronic disease.  HPU is heavy metal poisoning and it can be treated effectively with oral chelation at home.

I read a lot on mercury poisoning, HPU, KPU, zinc deficiency and safe chelating.  I consulted with several doctors before I put a plan together that worked for us.

From a support group – The Better Health Guy wrote:
The right amount for most people is about 40-50mg elemental zinc a day. More at the beginning up to around 60-80mg of zinc a day. So that’s up to ~8 capsules of Core at first and then ~4 for maintenance. I personally would never do more than this without being closely monitored by your doctor and a heavy detoxification program in place. I did 200+ for a long time and it was one of the most difficult times of my recovery. Many other people have really struggled with KPU at high doses and I personally don’t feel like it is necessary to push that hard and fast as it isn’t easy.All zinc dosages in the US are elemental. So if you get 50mg Zinc Picolinate, that’s 50mg of elemental zinc. If you get 25mg of Zinc gluconate, that’s 25mg of elemental zinc. In Europe, they label differently, but in the US, they list the elemental zinc regardless of which salt is used.

 

Dr. Klinghardt recommends Core by Biopure – we took the ingredients in that supplement and broke them down to individual supplements and bought the most pure supplements we could afford.  I look for veggie caps and as few fillers as I can find.  I use vitacost, amazon and iherb – and sometimes I  use other sources I have access to.

We started taking zinc at increasing doses while increasing vitamin, mineral and taking 2-4 Tablespoons of organic cold pressed oils per day. We got our final protocol by comparing the protocols that were similar (Dr. Klinghardt, Dr. Yu, Cutler, Hubbard)

We did not do IV chelation because there is too much out there about the dangers DMPS by IV and my biggest concern was that I did not want to harm our brains.  When detoxing heavy metals, mobilizing mercury and other extremely toxic substances that are IN YOUR BODY, you want to make sure it is leaving the body, not redistributing to the brain.  Slow, oral chelation, is not risk free either.  That is why I read so many sources before I started any protocol.  I believe the one we chose was effective and safe.

Oral Chelation Rounds

Amalgam Illness

Amalgam Illness – Andrew Cutler

We did around the clock oral chelation with DMSA and then ALA – taking low dose – every 3 hours – 4-5 days a week with a 2-3 day break

We used the book, Amalgam Illness to set up this plan.  If you are going to attempt it, read the book, or work with someone who has read the book who can help you with the details.

We started with low doses of DMSA – did a round, then upped the dose in the next round if there were no reactions during the 4-5 day round.  If there is anything uncomfortable going on during a round, the next round stays at the same dosage or backs down.  It is tedious because you must wake up every 3 hours during the night to take pills.

The gains are worth the difficulty! We saw heavy metal levels decreasing in overall body burden and major mental gains.  The brain fog was lifting after each round.

Alpha Lipoic Acid (ALA) is found in a lot of over the counter supplements and in stand alone supplements. Alpha lipoic acid is unique in that it is both water- and fat-soluble; thus it can be used throughout the body. It is a strong chelator (binds to metals) and the only oral chelator known to cross the blood brain barrier.

From my research, no one with heavy metals should take supplements with ALA until they are SURE they have detoxed the brain of heavy metals. This means doing AT LEAST a few rounds of round the clock (every 3 hours) ALA – before taking ALA as a once a day supplement. If you have any reactions taking supplements with ALA – it could be because you are heavy metal toxic, specifically, your brain is heavy metal toxic.

Since the air we breathe has mercury and other cancer causing toxins – assume you have heavy metals unless you have actively detoxed them and/or done proper testing to make sure you are not heavy metal toxic.

Some people tell me they had blood testing that showed they have no heavy metals – that’s hogwash and the doctor that suggested testing blood for body burden is mistaken.  If you have heavy metals in your blood, you have an active poisoning going on.  You are being exposed or were recently exposed to whatever toxin is in your blood.

After an exposure, heavy metals tend to park themselves in the fat cells and the 2 fattiest organs – the brain and the liver.  You won’t find past exposures in blood.  IF you are able to detox heavy metals, you may be able to find a representation of body burden in the hair.

Some of the sickest people are holding on to those metals and cannot detox them at all, their hair will be harder to read.  It may show very little heavy metals until detoxing agents are applied.  I have seen autistic children test hair and almost not treat heavy metals because the amount found in the hair is so low – they do a couple of rounds of oral chelation – test again and the hair is loaded!

If you have trouble reading your hair test, you can contact me, join one of the support groups for oral chelation that are in this blog, or read the book: Hair Test Interpretation: Finding Hidden Toxicities.

When DMSA has been used in enough chelation rounds (as outlined above) and the body is somewhat cleared of the heavy metal burden, it is okay to start using ALA in around the clock oral chelation rounds.

On days when doing the round the clock rounds of pills, every 3 hours – I would put the pills in pill boxes with times labeling each individual pill box. I would set my alarm on my phone for every 3 hours – and take the pill immediately when the alarm goes off.  It is VERY easy to forget if you have taken a dose. Especially if you are very metal toxic – the oral chelation rounds can make you even more forgetful than you were before – and for me that was a major handicap.

Infrared Sauna Detox

We would take Niacin 2-3 hours before we got in the infrared sauna and we would sweat for 60-90 minutes in the sauna. If it took 15-30 minutes to start sweating we would stay in for an hour or more after the initial sweating.

The first sauna we got was a portable infrared sauna that is like a tent around a chair.  Then we got an infrared dome sauna that you can lie down in and now we have a Clearlight full spectrum infrared sauna

Sauna has been very helpful in getting well.  If you are going to use a sauna, it is important that you replenish essential minerals and eat whole foods with plenty of nutrients.  Most food is depleted of nutrients so please be responsible with making sure your body has what it needs to thrive and be healthy.

The book Clear Body Clear Mind and the research of Simon Yu support sauna detox and give lots of great info for getting well using the sauna to sweat out the toxins and high doses of vitamins and minerals to replenish what is lost when you sweat.

We used binders like activated charcoal, bamboo charcoal, bentonite clay, zeolite, chlorella, diatomaceous earth — these need to be taken away from food and supplements so they don’t absorb nutrients the body needs.  Bedtime is a good time to take binders if you are not taking other supplements at bedtime.

Binders bind! If someone is not pooping regularly and they add a binder, they may have a bigger problem than before.  A couple of natural things that can make poop move – magnesium oxide and vitamin c.  Neither are toxic – so take them until poop is moving regularly.  Regular cycle is at least once per day.  Some say 3 times a day – but I find that inconvenient.  Once in the morning… every morning… is enough.  If you are not moving your bowels – or if you are not peeing – do not start any oral chelation protocol until you are getting toxins out through pee and poop.

When I say “we” did chelation – my son and I were both mercury toxic and we did out treatments at the same time.  We treated HPU from January 2012 to April 2012 – in April, we did a hair test on my son that showed his toxic metals were almost at zero and his essential minerals were in the normal range.  He was still throwing up, having seizures and very sick.

That’s when I started looking for other things that could be keeping him sick.

We found toxic mold… my son was 100% well 4 months after we moved out of our home that was full of toxic mold.  Could he have gotten well so quickly if we had not already treated the toxic metals?  I don’t think so.  I do think the toxic metals have to get out of the body  to let the body release these other toxins (mold, Lyme, other infections).

Here are some other blogs about mercury poisoning:

Natrual Help for Chronic Reactive Arthritis

The Liver is Connected to the Teeth?

Mercury Poisoning Detox – links to Yahoo support groups

Kryptopyrroluria (aka Hemopyrrollactamuria): A Major Piece of the Puzzle in Overcoming Chronic Lyme Disease

My working HPU protocol with some product and dosage specifics

None of this is medical advice. I am sharing what we did in the hopes that it can help you or someone you love who is suffering with chronic illness.  See Disclaimer

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3 thoughts on “If Someone is NOT getting WELL with Lyme Treatment

  1. Janet

    My daughter is in need of a Lyme literate physician prefarrably one schooled under Klinghardt. We live in SC but will travel up to 600 miles, can’t afford to go to CA where I know there are some great doctors. Please send any information on a good doctor to manyroadstohealing@gmail.com

    Reply

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