Elijah Blue (Cher's son) and lyme disease

Roxie60,
I saw that too and was wondering the same thing. Maybe we need to go to Germany!

He did comment on how lyme wrecked his body I was just hoping he had a public record describing his experience. Was Cher reported to have lyme at some point???

He went to the same clinic as Farrah Fawcett did to seek treatment. The first time it didn't work, and he said he wondered why he would ever go back, but he did. The second time it did work. The clinic is run by Dr Ursula Jacob and it is $15-20,000 a week!

Excerpt from Daily Mail interview:

"My drug addiction was pretty much about an eight year thing of really heavy using. I was taking lots of drugs on the road. I was smoking dope (heroin), taking a lot of pills, any pain killer we could get and drinking,’ he said.

However it wasn’t the drugs and hard partying that nearly killed him but the tick-borne illness Lyme disease, which he thinks he contracted after swimming in the Ganges river in India in 2005.

Lyme disease can go for years undiagnosed, but in 2007 when he first started feeling rough, doctors in LA were baffled by his condition and couldn’t diagnose what was wrong.

He said: ‘They did every kind of test, they even did the Lyme test. After that, I kind of gave up that Allopathic western medicine route and went natural.’

However, that didn't go much better and when one ‘body cleanse’ went wrong he ended up in an intensive care unit for two weeks.

He said: ‘I felt probably the closest to death I’ve ever been. It’s like my life force was just being drained out of the bottom of my feet.’

In 2010, Elijah re-launched himself as an artist with an exhibition in Malibu, which Cher and Chaz both attended, but said he felt ‘horrendous’ throughout.

Soon after, he decided to leave America for an alternative medicine retreat in the Black Forest in southern Germany.

He had in fact tried the clinic, run by Dr Ursula Jacob, once in 2008 for a two-week stint and it hadn’t worked. That time he attended with dying actress Farrah Fawcett.

Explaining, he said: ‘I had gone with Farrah right before she passed away, when she went there in 2008. They didn’t do **** for me. So I was kind of stupid to go back thinking they could do anything.’

But the clinic is a celebrity favourite and Dr Jacob was a family friend so he returned in autumn 2010.

He said: ‘A lot of people in Hollywood know it (Dr Jacob’s clinic) and have been going to for a variety of reasons, youthful tonics, some for cancer treatments or whatever. It is very expensive… it can beup to $15-20 grand a week.’

Describing the treatments he endured, he said: ‘I did stuff like artificial fevers where they put you in a tube for five hours and give you like a really dangerously high fever. I did that like 15 times in the Black Forest.

‘I had two 15,000 Euro stem cell shots to the stomach. It wasn’t pretty. I spent a solitary, introspective, uncomfortable winter there.

‘My nervous system was so tweaked that I was just kind of immobile and my veins were gone with the amount of infusions they were giving me every day. I was the longest person to ever stay at that clinic.’

Other alternative treatments Elijah tried elsewhere included a ‘blood supply clean out’ and even snake poison.

While there, Elijah found Cher somewhat unsupportive of his plight.

He said: ‘It was very hard for my mother to accept my illness. The going notion for a lot of years was that it was imaginary because that’s just easier.

‘That’s not to say she wasn’t supportive because she was, but in that bitter cold when you really don’t know if you’re going to wake up and be alive tomorrow you need extra from everybody. You absolutely need unconditional parental love in those dark hours, that was lacking from that direction.’

After leaving the clinic feeling no better, Elijah moved into an apartment in Cologne and finally started to make a recovery under another alternative doctor who practised ‘energetic medicine’.

He also met Angie on a blind date and fell in love. The love-struck pair travelled Europe together – enjoying a private tour of the Louvre museum in Paris - before finally moving back to Los Angeles.

Yes... Wasn't sure if we could post it. Here it is...

http://www.dailymail.co.uk/tvshowbiz/article-2551939/Cher-never-congratulated-marriage-Elijah-Blue-reveals-rift-famous-mother-recovery-heroin-addiction-explosive-new-interview.html

Boy, do I hear you Roxie60! My daughter is 19, and she has been suffering for 13 years - misdiagnosed and untreated by several doctors from infectious disease, to neurology, to orthopedists and endocrinologists. Our family never took it seriously nor did the pediatrician who told me to stop taking my daughter to doctors! Then a neurologist told my daughter to apply to colleges as far away from me as possible after she failed a neuropsyche test "worse than an alzheimer's patient." I was livid.

Finally, I found a pediatric LLMD and he diagnosed lyme, bartonella and babesia through Igenex. Not only that, he did a brain spect that showed encephalopathy with hypoperfusion (lack of capillary blood flow to the brain) in the frontal, temporal, and parietal lobes and basal ganglia. This was after six months on oral antibiotics that did nothing. He suggested IV rocephin, and of course, the insurance wouldn't approve it.

The wanted another neurologist's opinion and we went to a large teaching hospital and saw the head of neurology. At first, he believe it was lyme after seeing 13 yrs of western blots with 3 Igm bands (but only 1 Igg band - 41). He wanted to do IVIG and reboot her immune system, but first wanted to do his own bloodwork. That came back negative for lyme...only one Igm band showed up (41) and no IgG bands...Hospitals only test for one strain of lyme while Igenex and Quest specialty labs test for more (300 at Igenex) and the hospitals don't test for co-infections. The one thing that showed up was high thyroid peroxidase antibodies (417 when the norm is below 35 or in some labs 5). She was diagnosed with Hashimoto's in 2010 (a pre-cursor to hypothyroidism), and our llmd believes it is secondary to lyme.

Unfortunately, the neurologist hung his hat on that. He did a PET scan and a PET MRI and spinal tap and EEG. The spinal and EEG were normal and did not indicate lyme BUT did not indicate hashimoto's either - generally lyme shows up in CSF in only 19% of cases. However, in the PET scan and MRI, it showed severe hypometabolism (seen in dementia and alzheimer's patients) in the temporal, parietal and occipital lobes and cerebellum. It was so bad, they scanned her whole body looking for cancer. I was devastated. And it angered me that in the 13 yrs not one doctor remotely believed her symptoms (swollen ankles and feet, brain fog, bonecrushing fatigue, fragmented sleep, inability to focus and concentrate....scalp and hair follicle pain, knee and hip pain).

This neurologist said that since their lyme tests were negative and only hashimoto's showed up in the blood work, he recommended 3 days in the hospital on IV solumedrol (a steroid) with 1000mg a day .... then orals in between each 3 day hospitalization over the course of six months. I said thanks but no thanks, I know it is lyme. She had a tick bite - no rash but we removed the tick at age four or five.....

Three weeks later, we redid all the tests yet again with our llmd and everything came back positive. We also did a culture through Advanced Labs and that was positive and they sent a picture of the spirochetes, and we had an anti-neuronal antibody test through Moleculera Labs in OK. It is called the Cunningham Panel and it tests for PANDAS and PANS. She came back likely for PANS, since she didn't have strep throat as a child which is what PANDAS comes from. PANS comes from infections like lyme, so they termed her encephalopathy "infection-induced auto-immune" encephalopathy - but yet again, she was asymptomatic for that. The symptoms include tics, tourette's or OCDS - sometimes panic attacks and depression and anxiety. The latter two can be caused by virtually anything. The treatment for that is IVIG (gamma globulin) but that is something the insurance won't pay for either and they are $10,000 per treatment and she'd need about 6-8 treatments.

I finally got approval for IV rocephin, so next week we will put in the picc line despite my doubts about it working. Some people have been on it up to 10 yrs. That's not going to be the case for us. I'm upset because she took a year off and deferred college to get well, and there have been no changes. She has taken detox drops and is on methyl-protect (she has the mth fr c677t gene for coronary artery disease which makes it more difficult to detox and she needs methylated B's) and a bunch of other vitamins and supplements especially EPA/DHA, gingko biloba, neurotransmitters and vinpocetine for the brain. Tons of probiotics as well. But she still can't get to sleep before 3-4am and sleeps till about 3pm....it's horrible to watch.

If the rocephin doesn't work, then we will have to switch to herbals, but to date, nothing has been proven to reverse encephalopathy.

I wish everyone well.... as I know how isolating this disease is. Not one member of my family (even my ex-husband) gets it. It's just my daughter and myself. My parents passed away many years ago, and I rely on close friends for support and the lyme forums...

My goodness, you and your daughter have had such a long, hard battle. I wish the best for both of you and I pray your daughter is on her way to recovery.



Patty

Medavinci

Thank you for sharing your story.. It is all too familiar! I was just diagnosed with Lyme.. Been suffering my whole life with doctors not being able to give me any answers, they use to tell my mom I was just trying to get out of school! I'm 25 now and we think I was infected at 2 yrs old. Unfortunately I don't have the energy to go into more details but I do have a question.. What is the doctors name that is in Georgia? I am very interested! I'm super anxious about starting IV infusions again.. If I can get healthy without them that would be AMAZING!

I too am at my wits end... I have been taking pills for my whole life. I am on a natural path but still, taking 50+ vitamins/supplements a day just isn't normal. I feel for your daughter and I pray she will get the treatment that will CURE her so she can enjoy college! She can do it! :) she is lucky to have such a supportive and understanding mother through this horrible time.


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Ina

Hi medavinci can you please post about how the visit went? I am in MA and may be interested in seeing her. Thank you!

Thanks you so much! I am hoping for no snowstorm too because I was supposed to get a lot of labs done last week and couldn't because the lab's plane was grounded for days because of the storm. Good luck!

Purple horse, thank you. I'm not sure how to PM you. I clicked on your name but not sure how to send from there...

medavinci said...
Ina,

It makes me so angry when I hear doctors say you don't want to go to school, or it's depression, or you want attention.

My daughter's biggest fear is that she will go on rocehin and perhaps feel better, but once she goes off it, she will feel badly again. Our LLMD said the only way to reverse her encephalopathy is with rocephin, however, I've read that at this stage it may not work at all.

We are going to see the soviet woman (she was a dr in the Georgia in the USSR, but is not licensed here) tomorrow as long as the snow stays away! She is in Woodbury, CT. I don't know where you live, but if it is a viable location that you can get to, I can send you a private message with her information.

I hope and pray you get better!

@ medavinci.  We have been through much of what you have, although I didn't spend as much time chasing CDC/IDSA treatments.  Treating the coinfections is as important (or more so) as treating lyme. 

Herbals have worked well for us, especially the anti-inflammatory herb japanese knotweed.  It works well for brain inflammation, as apparently does kudzu (according to Stephen Buhner).  Buhner's herbal protocols can be used concomitantly with abx and for our daughter, cryptolepis is working as well as malarone did.  Educate yourself on his protocols and treatment paradigms.  They are different and very effective.

His books:

Herbal Antibiotics

Herbal Antivirals

Healing Lyme coinfections: Mycoplasma and bartonella.    

 

Does anyone know what happened with medavinci's visit to the Russian doctor in CT? Was it another dead end or something to consider?