Elijah Blue (Cher's son) and lyme disease

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Roxie60
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   Posted 2/5/2014 7:58 PM (GMT -6)   
Just saw on tv that Eliza Blue had lyme and got treated in Germany. Anyone know if he has shared his lyme story? Any links?

lymekiller
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   Posted 2/5/2014 10:46 PM (GMT -6)   
Roxie60,
I saw that too and was wondering the same thing. Maybe we need to go to Germany!

Roxie60
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   Posted 2/5/2014 11:02 PM (GMT -6)   
If we had his resources we just might.

Roxie60
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   Posted 2/5/2014 11:03 PM (GMT -6)   
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???

TICKLEDPINK
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   Posted 2/6/2014 5:39 AM (GMT -6)   
I live in Germany and I most certainly wouldn't recommend coming here for treatment rolleyes

Maybe it's different if you can afford private clinics but the general run of the mill treatment isn't any good..

Tickled

medavinci
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Date Joined Oct 2012
Total Posts : 7
   Posted 2/6/2014 3:19 PM (GMT -6)   
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.

Roxie60
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   Posted 2/6/2014 3:25 PM (GMT -6)   
Thank you. Is there a link to this story?

medavinci
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Date Joined Oct 2012
Total Posts : 7
   Posted 2/6/2014 4:03 PM (GMT -6)   
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

Roxie60
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   Posted 2/6/2014 4:18 PM (GMT -6)   
Thx. I try to collect lyme stories from those with more visibility....I send to family members I still try to convince something real is , has been wrong with me....I guess for some reason they will believe someone else since I did not get them to believe I was sick.

medavinci
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Total Posts : 7
   Posted 2/6/2014 5:19 PM (GMT -6)   
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...

Roxie60
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Date Joined Jun 2011
Total Posts : 983
   Posted 2/6/2014 5:39 PM (GMT -6)   
OMGOSH, your story, your daughter's story so sadly familiar. I would add 'mistreated' to that list. Your daughter has a loving mother. Everything you described is so spot on regarding so many problems patients experience over time. It is maddening, frustrating the lack of understanding by doctors and family members, so called friends. I also find it is not possible for me to goto sleep until 4-5 am. If I can goto sleep earlier it is only for an ur or so and then I'm awake till early am.

I had an issue with thyroid for first time last fall, I was so sick. I was hypothyroid for a couple months and on thyroid med then two months later woodwork back to normal.

I am so sorry to here all you and your daughter have been through. I pray to god for a breakthrough on this awful illness, increased awareness, compassion and answers for so many suffering.

summer16
Regular Member


Date Joined Jul 2012
Total Posts : 448
   Posted 2/6/2014 5:39 PM (GMT -6)   
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
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012

medavinci
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Date Joined Oct 2012
Total Posts : 7
   Posted 2/7/2014 9:52 AM (GMT -6)   
Roxie and Patty, thank you both for your well wishes. I'm hoping that something good will come out of the picc line (to be put in next week). I had hoped to go with a Soviet dr I heard about who has had great success with Lyme patients, but these wretched snowstorms had other plans for us.

The dr is from the province of Georgia in the USSR, and has been in CT for 9 yrs. she was a practicing pediatrician for 20 yrs and comes from a line of drs and healers who use herbs to cure people. She uses medical massage (5 days in a row to get you to herx) and makes her own teas and oils for you to drink depending on your condition. I was referred to her by a woman who took her granddaughter (9yrs old) to her and she helped her immensely. She's gotten people on their deathbeds in hospitals back to life, and others in wheelchairs or without feeling in their legs to walk. One man was sleeping 22 hrs a day, and after a couple of sessions was able to get up early and run again.

I didn't believe it at first thinking it was too good to be true, but I spoke with people who went to her. For pain in the knees, she wraps cabbage leaves around them, and the pain goes away almost immediately. That's what she did for the woman I spoke with whose granddaughter remitted. Another man who had no feelings in his legs and was a former marathon runner on an IV drip for 10 yrs is also now up and about so much better off.

We don't have the patience for long term IV treatment. My daughter is way too young to go years and years on this. Plus rocephin causes gallstones, and having to be on actigall on top of all the other meds is a bit barbaric. My daughter has missed her middle and high school years, and I don't want her to forfeit college. She worked hard to graduate. It was no easy feat with fatigue and cognitive issues, but we found a high school for the last year and a half that nurtured her and understood her illness. In the end, she wound up applying to 23 colleges during hurricane sandy, and her hard work paid off with scholarhsips. I'd hate for her to have to lose them if she can't go to college in the fall. Colleges only allow you to defer for one year, so it is make it or break it time for us.

Inabella
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Date Joined Feb 2014
Total Posts : 1
   Posted 2/9/2014 4:40 PM (GMT -6)   
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.


x
Ina

medavinci
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Date Joined Oct 2012
Total Posts : 7
   Posted 2/9/2014 6:17 PM (GMT -6)   
Ina,

I feel such compassion for you and what you have gone through and are going through. Thank you so much for your kind words. Everywhere I turn these days, I see more and more children and adults with Lyme! It breaks my heart. There are days when I actually wonder if there isn't some other disease out there that is causing all these problems that might be confused with Lyme. How many times have you been on IV, and did it help any? 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!

Lymebabe
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Date Joined Jan 2014
Total Posts : 1260
   Posted 2/9/2014 6:22 PM (GMT -6)   
Hi medavinci can you please post about how the visit went? I am in MA and may be interested in seeing her. Thank you!
Tick 11/2011
First symptoms 9/2012
Incapacitated 8/2013
Abx that have not been working and looking for something that will work

medavinci
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 2/9/2014 6:32 PM (GMT -6)   
Lymebabe, we are going tomorrow barring anymore snowstorms which prevented us from seeing her last week. I'll post after that for sure.

Lymebabe
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Date Joined Jan 2014
Total Posts : 1260
   Posted 2/9/2014 7:07 PM (GMT -6)   
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!
Tick 11/2011
First symptoms 9/2012
Incapacitated 8/2013
Abx that have not been working and looking for something that will work

purplehorse
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Date Joined Feb 2014
Total Posts : 1
   Posted 2/9/2014 8:51 PM (GMT -6)   
Medivinci, Hi. I would also be interested in learning about your experience with the Georgia healer. If you can PM me with her name, I would very much appreciate it. Thank you! Good luck & prayers for you & your family.

medavinci
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 2/9/2014 9:23 PM (GMT -6)   
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...

Lymebabe
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Date Joined Jan 2014
Total Posts : 1260
   Posted 2/11/2014 8:42 AM (GMT -6)   
How was the visit? The planes were flying yesterday where I am so my lab work left on time LOL!
Tick 11/2011
First symptoms 9/2012
Incapacitated 8/2013
Abx that have not been working and looking for something that will work

rowingmom
Veteran Member


Date Joined Dec 2011
Total Posts : 615
   Posted 2/11/2014 12:39 PM (GMT -6)   
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.    
 

2008 - insect bite (bruise-like rash)
2010 - Dx ADHD, motor/vocal tic disorder, high functioning aspergers, motor delay, symptoms of PANS/PANDAS autoimmune neurological syndrome.
Jan 2011 – bartonella pain symptoms begin.
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbal, homeopathic treatment.
April 2013 - Weaned from abx treatment. Continuing wth Buhner, Byron White, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure
Dec 2013 – Symptoms 98% resolved. ANA titers negative.

Post Edited (rowingmom) : 2/11/2014 10:51:39 AM (GMT-7)


intution
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/22/2014 10:22 PM (GMT -6)   
I have been following the Buhner protocol and buying herbs from Great Cape Herbs. I think the herbs are helping with the brain fog and I am going to keep taking them.

I would love to know more about the Russian woman healer. If possible could someone send me her name?

Thanks,

I love this forum.
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