Now it’s my dad!!

[mkbeeliever]

Hello All! Its been a very long time since I’ve posted here. I am sad that I have returned but happy to connect with you “veterans” again. Hi to all of you old or new! It’s been two years since my mom passed. Time goes by so quickly! I miss her with every fiber of my being.

So…guess what? My dad is sick now. Here is what he’s been going through since April:

Dad had a back operation on April 11. They inserted a device called a “Coflex” into his low spine instead of doing a fusion. He has run fevers every month since he had that titanium put in his body. He has severe cold chills (looks like he’s convulsing) and his fever gets up to 103 sometimes. This cycle does pass but he still is not himself after. His body is being attacked by something. He gets a rash on his face, flaky skin on his face, runny nose and severe dizziness before these attacks. He is hospitalized and released once fevers go away. This has been happening every month since April. They have run so many tests. Bone scan, MRI’s, Bone marrow biopsy, x-rays, blood work etc. All negative. There is no infection in his body. I have felt like this titanium Coflex thing has been the culprit all along. Hard to get doctors to take that seriously because NO NONE is allergic to titanium or titanium alloys. We have finally succeeded in sending a blood sample to a private lab in New Jersey for Melisa testing (metal sensitivity/allergy) and the results came in today. NEGATIVE. He’s not having a reaction to the titanium. We are at our wits end.

So, smart, amazing, helpful people: Could my mom have passed the Lyme to dad? Could the surgery have activated the Lyme?

Any comments, theories are welcomed! xxoo Michelle (Michou to Lynn!)

[Krys]

Hi Michele,
It is so lovely to see you back, but so sad you have your dad’s serious health concern to worry about and solve now.
I love your blog!!! 😀
In your last post you mention a Physician’s Assistant connecting the dots between your dad’s intake of Procrit and his symptoms:

…and offhandedly one of us said he’s gone Thursday to get his “EPO” (Procrit to help him make red blood cells as he’s anemic) shot and had chills that night and then full out sick Friday night etc. etc. You could just see the light bulb go off in this guy’s head. He said “this is presenting to me like serum sickness.” (…) He explained that he thought Procrit shot was making him sick.

But this post was dated July 26. Does it mean you have found no connection when your dad discontinued the shot?

@mkbeeliever wrote:

Could my mom have passed the Lyme to dad? Could the surgery have activated the Lyme?

As far as I understand it is YES to both.

I hope you will get some great answers and the health riddle will be solved and resolved very soon.
Warm wishes,
Krys

[mkbeeliever]

Hi Krys!
Thanks for the reply and compliment about my blog! He has not had a Procrit shot since that “theory” and the fevers have happened again since. 😥

[PhilC]

Hi Michelle,
@mkbeeliever wrote:

They have run so many tests. Bone scan, MRI’s, Bone marrow biopsy, x-rays, blood work etc. All negative.
There is no infection in his body.

No one can say that. There is a very good saying I read not long ago: “Absence of proof is not proof of absence.” If doctors run tests looking for infections and don’t find any, it is WRONG to say, “You don’t have an infection.” That is faulty reasoning. It is like looking for a needle in a haystack and then saying “There is no needle there,” after looking for the needle and missing it. All they can truthfully say is, “We were unable to prove that you have an infection.”

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Krys]

Hi Michele,
I hope our great investigative experts will see your post and reply with ideas.

It would help in the meantime if you posted what infections were checked for, if you received all the test results that were run and once you scrutinize them, have you noticed anything OFF?

You mentioned that he has anemia. How long? Has the medication he’s been taking had any effect on RBC? when you look at the blood tests, can you see the size of the cells being slightly too large? (I don’t remember the name, but I remember being surprised at my first blood test after the infection that the size of the cells was mentioned to be abnormal, just slightly too big. I think it will be an additional factor to confirm that there is a blood cell infection.
I don’t know all the bacteria that infect the blood cells, but Babesia, Bartonella and mycoplasmas do.

I understand that you have not ordered any tests for those infections.
It would probably help to see what tests to focus on in the beginning (they ARE expensive as you already know) if you went with your dad through a symptom list and then checked him yourself for the appearance of papules, warts, VEGF, rashes, any bulging areas around the ankles, check his feet, toe and finger nails, nodules (not just around the joints like in RA, but also on muscles like in Bartonella), any blood filled warts (they can be very minute), etc.

It is strange and interesting that your dad’s symptoms come back once a month.
As I remember Lyme replicates itself about once a month. Bartonella does more often but on its own does not cause severe anemia. Once the bacteria reach number 8 (unless I messed it up and it is another number under 10), they stop replicating. If they do replicate, the blood cell bursts and they invade some more cells. I don’t remember if Babs follows any once a month pattern.
So to clarify: does your dad experience night sweats/ chills only once a month for a few days and then it is all gone until the next time?
Could you post the numbers on his blood tests throughout last few months he’s been experiencing that?
Did his anemia start just lately or is of a longer duration? If it started before his surgery, did he have any sweats/chills earlier, even minor ones? Does he tire easily? How is he sleeping? How is his digestion? babesia often causes digestive track problems, including pain. But lack of those would not rule it out.

Krys

[Eileen]

Hi Michelle,

It’s nice to see you here. 🙂 Sorry to hear about your dad though. Did your dad receive any blood during his back surgery?

I hope you will find some answers here.

xoxo
Eileen

[Krys]

I forgot. Here’s 2 good symptoms lists to check:
– http://www.endowmentmed.org/pdf/updatelyme.pdf — page #2
– this one is excellent but right now it keeps timing-out for me. Hopefully it will open up for you:
http://www.lyme-symptoms.com/LymeCoinfectionChart.html

I also think it might be helpful if you uploaded a photo of your father’s rash. I never heard of a rash that appears right before some more serious symptoms (or is it like high blood pressure face flush?), but then, I don’t know that much. It may be indicative of something. Maz and lots of others might be able to say something once they saw it. I have a few books with colored photos of various skin manifestations of some co-infections, but I would need to see the photo of your dad’s rash to run it against the pictures in the books.
Krys

[Krys]

@mkbeeliever wrote:

Dad had a back operation on April 11. They inserted a device called a “Coflex” into his low spine instead of doing a fusion.

Why was the talk about fusing his his low spine? Did he have AS? cartilage loss? damaged discs?

[Valsmum]

Hello my friend, Michelle,
I am so sorry to hear about your dad, it must be so hard. May I ask what medicines he is taking? and which ones weeks prior to the surgery? I wanted to add my two cents, I had really bad side effects from medication in the past two years. One time during a RA med infusion my pulse tripled and my chest was so tight they took me in a wheelchair to the ER and checked me out the rest of the day, then took me off the med. Then I started to get REALLY anemic from another RA med that has blood disorders written as a side effect on the label. I had to get over 5 units of blood in a blood transfusion after a little surgery and had to stay in the hospital for close to a week due to severe anemia. I am no longer anemic, but I was for a few years. So now when something is wrong with me I always suspect its a side effect of some med I am taking.
One more thing, could he have picked up a staph infection or another infection from the hospital?

I’ll offer my holy hour for your dad this weekend when I go to the adoration chapel.
I’ll pray for you too.
Take care Dear

[Lynne G.SD]

Hi my darling Michou;
You asked if your dad might have caught Lyme from your mom….the answer is YES.It can be passed on from mother to baby and through blood transfusions as there is no test for Lyme in the blood.They can detect HIV and Hep C but not Lyme.
For 3 years I have been fighting the darned thing and just can’t get a handle on it so my doctor has put me on the Chronic Illness Recovery protocol because I have ended up with perpetual gut problems from the AP and likely the SD also.I have been on it for the last few months and doing sooooooo much better.I am not taking the full dose of Benicar advocated by the MP protocol,only half and it seems to be working just fine.My BP did drop about 15 points for the first few weeks but now remains just slightly below normal.The best thing about it is that it has knocked down my inflamation to just about nil,what a relief!
I am not surprised that your dad’s tests don’t show any infection.I can bet they did not test for micoplasma or Lyme.Mico are everywhere and if your immune system is not running well they can infect.I have a girlfriend who is a cancar researcher and she told me that often her slides become infected with them even when they are working in a sterile environment.She gets most ticked off as she must start all over again.So you can just imagine what is floating around a hospital.
I will say a big prayer for you and dad.
Love you baby.

[Maz]

@mkbeeliever wrote:

Dad had a back operation on April 11. They inserted a device called a “Coflex” into his low spine instead of doing a fusion. He has run fevers every month since he had that titanium put in his body. He has severe cold chills (looks like he’s convulsing) and his fever gets up to 103 sometimes. This cycle does pass but he still is not himself after. His body is being attacked by something. He gets a rash on his face, flaky skin on his face, runny nose and severe dizziness before these attacks. He is hospitalized and released once fevers go away. This has been happening every month since April. T)

Hi Michelle,

Really sorry to hear about your dear old Dad.

There is little I could add to the great suggestions above, but one other thing came to mind while you were describing your Dad’s symptoms post spine surgery that may be of help. When I was at the ILADs Lyme conference in Boston, last fall, there was a lay speaker, Richard Longland, MS, who is one of the Directors on the Board of the Arthroplasty Foundation. I think he could prove to be an excellent resource for you, because when got up to speak, he pretty much described exactly what your Dad is experiencing after spinal surgery that he went through! His story is so similar, in fact, that I think this is what brought him back to mind immediately as I read your post above:

http://www.arthropatient.org/resources/

My best suggestion would be to contact Richard Longland who is a lay expert on chronic spinal infections and he should be able to provide you with resources and medical community experts who may be able to take a look at your Dad’s case and see if they can point you in the right direction. You’ll find a website contact submission form here:

http://www.arthropatient.org/contact/

If you have any trouble, let me know, because one of RBF’s board of directors is also on the board of the Arthroplasty Fdn and I’d be happy to ask her if she can get you in touch with Longland.

At ILADs, his talk included info on biofilms (as discussed in the link above). I think it was Lynne above that said that “absence of evidence isn’t evidence of absence,” and wholeheartedly agree with her on this. Just because they did a spinal tap on your Dad doesn’t mean they were looking for every possible organism or if they were even looking for biofilm evidence on the titanium implant. In the case of Lyme disease, (as per ILADs guidelines) LLMDs on the whole do not use spinal taps, because (a) they’re risky and invasive and (b) only have about a 7% rate of specificity for picking up Lyme in spinal fluid. In other words, the risk/benefit ratio isn’t worth the risk.

Presumably your Dad’s doctors have assessed him for other causes of his fevers and anemia aside from infectious causes? There are other differentials that may also need to be ruled out.

Hope this lead will provide you with some ways forward, Michelle. Please let us know how you get on and sending best to your Dad.

[A Friend]

Michelle,
Found this link to Metal Allergy some time ago, after reading your post below. Looks like I did not make you aware of it. I posted the information in a separate topic, as I noticed several others had also mentioned possible metal allergy problems.

viewtopic.php?f=1&t=9616&p=70585&hilit=metal+allergy#p70585

Hope your Dad is doing better by now.
AF

---

Michelle,

You’ve been missed on this board, and I’m so sorry to learn about your dad’s ongoing problems. Sometimes when chronically ill and being on lots of medications, this can cause an increase in unhealthy organisms multiplying into greater yeast/fungal overgrowth. There is some kind of test that can be sent to a lab to test for this. If this is one of his problems, it needs to be known and treated, as this condition without treatment, special diet, or something to reverse it, will probably continue to depress his immune system and make him feel unwell.

After posting this, I read Maz’s post, and it sounds like she has given you some really good leads for help.

I did a search using words you mentioned pertaining to your dad’s titanium insert. This is a link found, and there are many posts with information about titanium rods, etc. being in the body and the patients’ adverse reactions. In some of the posts, another metal was mentioned as leaching from the titanium appliance that can cause further problems.

You may find some helpful clues from reading the posts. The link is:
http://www.medhelp.org/posts/Allergy/Allergic-to-titanium/show/4076

Michelle, when you were posting some time ago about your Mom, I identified with you then, as I had relocated rather than uproot my own mom when her health failed. We never get the chance to do things over, and I’m glad I made her a priority in my life then. I became the mom and she the little girl, and I made a decision to inject as much playful humor and teasing into our time together as I could. She seemed to love it, and I did, too.

I hope you will be able to find the culprit behind your dad’s current problems, so they can be addressed, and the two of you can have fun together. Good luck!!! Give him my best wishes.

Hugs,
AF

[Cheryl F]

Michelle:

Just jumping in to say hi, and I am sorry to hear of your dad’s health problems. I feel like we all know your family personally from your time here in support of your mom.

Do make contact with Richard Longland, I am certain that he will have some valuable input.

Good to “see” you back but sorry you had the need to come back in search if solutions to your dad’s issues.

Cheryl

[lynnie_sydney]

Hi Michelle
So very sorry you are now having to deal with this health problem of your Dad’s. Richard Longland and The Arthroplasty Foundation seem like a great resource for you to further your investigations. Hoping you find some answers soon. Keep us posted.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[cavalier]

Maz – I didn’t know Rich was there – he is a friend of mine. We have never met but we got back to 2003 10 yr’s.

He & I got our ADR’s done in 2004 for our backs.
He still was sick & he did the movie – I have a copy I am prob. getting the name wrong but it maybe – Why are we still sick? talks about the microplasma’s.

I used to be on his forum for years & we met thru another forum before he had a forum of his own. He’s a patient advocate & he called me again just a few mo’s ago to offer some help ozone was a suggestion & it was worth a shot. He had some other ideas of which I use a couple that are helpful overall.

It’s a small world.

Jill

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