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Author Topic: Important Update - Why I gave up on my Lyme diagnosis
Wolfed Out
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First, I want to say a big THANK YOU to those that were here to talk with me during the roughest time of my life. I was happy to see familiar names still helping others in need on the board, and sad to see some of the same names still posting about their continuous struggle.

Sometime around a year ago, I shifted into the dark away from LymeNet and all those I had been talking to about Lyme since I was given my diagnosis in December of 2009. I was one of the more active members on the board; asking questions about every conceivable symptom and medication I was experimenting with. But, a time finally came after 15 months of being loaded with antibiotics that I had a realization that this just might not be the answer for me.

For starters, I'm not your average case by any means. Here is a place where people are struggling with an incredible array of symptoms that the typical person has never experienced, and I still managed to be enigma. I had terrible reactions to just about every antibiotic and supplement I tried, and when I'd post about what had happened, hardly anyone could relate. For a while, I accepted the common response that I was suffering a unique "herx" reaction. But, like an abused lab rat, I had enough of being shocked every time I went for the water.

The kicker was the trust and faith I had lost in my Lyme doctor. I had been working with a couple different Nurse Practitioners that had quit abruptly, and I was starting to understand why. When I had a problem with medications, my doctor only had 1 answer -- a Herx. Regardless of how unique my reaction would be, there was no other solution. He kept repeating phrases about bacteria going to war and comparing my battle to World War II. That the fight against bacteria and my immune system was what was causing all of my reactions. None of that really hooked me for a believer; even more so when he said "I think you can have Lyme without having the borrelia bacteria." That one really lost me.

His NP's obviously didn't seem comfortable in his practice and looked nervous about helping me. I only made matters worse coming into the practice armed with information I had studied on the web and trying to copy protocols I read others doing for treatment. Always suggesting that more must be better. I can tell you all in full testimony that I loaded myself with over 100 different supplements and medications. Rarely did I look back on my overall situation, just trotting forward to the next magic bullet.

That was it for me. Lyme Disease had invaded every mental and physical part of my soul. I was an official, "Lymie." I put so much faith in this being the cause all, that I blinded myself entirely from any other potential remedies. More importantly, as if Lyme doesn't cloud a persons judgement enough, I let it cloud my own intuition and judgement when things just didn't add up with the people making the decisions about my health.

With the last bad Rx experience, I was in total despair about finding the magic remedy. My faith had vanished, and I wasn't interested in pursuing a miracle cure anymore. It was time to remove myself from the community, clear my mind, and rid myself of all these drugs. So, I did. I weaned myself off all antibiotics and supplements within two weeks. I was more afraid of getting off of the antibiotics then I was to pop a mouth full. After all, in 15 months of treatment there was a lot of progress made. But looking back, I'm not sure the antibiotics had anything to do with my improvement.

As I progressed through my lengthy treatment, the haze from "brain fog" had cleared enough for me to start putting some pieces together. All this time I had been focused on what drug or supplement would make me feel better, that I ignored what actually was helping me. For me, I can't say anything I swallowed for treatment helped me at all. But, I can say that avoiding certain things made a big difference.

The one thing I know for sure is I have food intolerance. I learned early on that fermented foods were a problem for me. That means I got a list with a mold elimination diet and removed every food on the list from my diet -- cheese, tomatoes, sauerkraut, all vinegar products, alcohol are just a few. Especially alcohol, because I never felt good the day after, even if it was only a drink or 2. In fact, I have had nothing but water to drink for the last three months. This all lead me to study other areas of my lifestyle.

Exercise wasn't doing it for me. I was doing one to two cardio workouts a week while skateboarding. And earlier in the treatment, I was still lifting weights in the gym, even though I couldn't keep any muscle on. I couldn't help but notice how tired I was after every workout. I was told to keep pushing through; that this was part of Lyme treatment. But, it didn't feel right anymore and so I decided to take a break. Lo and behold, my energy levels improved.

It was also evident that my stress levels would sky-rocket and exacerbate my symptoms if I slept less than 7 hours in a night. It's common in the Lyme community to assume hormonal and thyroid issues with Lyme, but I'd seen several endocrinologists that would not jump on board with notion. They ran a panel of testing, which always came back mostly normal and I was sent home with no help. So, if I wasn't going to receive treatment for a hormonal system I knew was damaged, I would have to treat it on my own with delicate care and rest. I sleep whenever my body tells me too -- no exceptions. Sometimes, that means a nap at 9pm. When I am faithful to a healthy sleep pattern, I generally feel well.

Even though I had been discouraged about my Lyme treatment, I never stopped looking for answers. I continued to research until I stumbled upon information about metabolic and mitochondrial disorders. This would be a turning point for me. Everything about mitochondrial disorders seem to match perfectly with my symptoms. So, I scheduled an appointment with a specialist in this area. Blood tests that were previously ignored were re-checked and new tests were carried out. This was the first time I received answers that weren't completely inconclusive to my symptoms. My iron saturation level was high in connection with an often overlooked diagnosis of Hemochromatosis (iron overload), and my l-carnitine levels were extremely high in connection with another rare metabolic disorder that affects mitochondrial cells.

I was finally able to connect why food had been such a problem for me, and why my energy levels were crushed. I most recently had DNA testing done to determine if this is a genetic issue or something I acquired later through another unknown cause. This is where I patiently wait today until the end of January when I meet with a hematologist. In the meantime, I studied more about the conditions and learned everything I had been doing for preventive treatment; avoiding excessive exercise, avoiding trigger foods and resting was the recommended treatment for my problems.

Hemochromatosis is not "curable" by standard medical definition, and can be exacerbated by going outside the treatment protocol. In other words, if I step outside the safe bubble lifestyle of perfect rest and eating habits I've created for myself, then my problems only get worse. This sounds a lot like what happens to some people who struggle with Lyme disease.

I thought it was important to come back here and share my story. Sadly, there are many people here who continue to push through "herxing" and continue to push the thresholds of their bodies tolerance in the hopes the next bullet kills this awful sickness. I empathize with everyone and their struggles. It's so hard to think objectively with so much suffering. We just pray that what we're doing for treatment is what is going to get us out of the torture chamber. But, had I not used my intuition to walk away and reevaluate what my situation is, it's likely I would be in far deeper than I already was. With my newly discovered conditions, I don't metabolize drugs properly and this is a better conclusion as to why I was "herxing."

I wish my conclusion was some kind of breakthrough for everyone, but I'm not naive enough to believe that. I still believe in chronic Lyme and the implications it has for some of the sufferers in this community. I don't share this information to deflate any of the work and progress others have done to increase recognition of this dreadful and misunderstood disease. However, there's a deep lesson in my journey that can't be ignored. If you're suffering through treatment for a long period of time, and things just don't seem to be improving for you, then it's probably time you step back and think about other potential solutions. I can't say for sure if I ever had Lyme disease, because my testing was always inconclusive at best. Or, if there's still some unknown disease or bacteria at the very bottom of all my most recent developments. What I can say for sure, is the course of treatment I chose to defeat my symptoms was only doing more harm than good for me.

At the bottom of this pit is the ignorance and criticism I received from doctors when I revealed my diagnosis of Lyme disease. None of them wanted anything to do with it, and my own Lyme doctor wanted to keep things confidential. This made it very difficult to work as a team with others to solve my issues and boxed me into being a "Lymie" without no ground to search for better solutions. This is a dangerous place to be. Only because I took the time to step away was I able to discover a doctor who found some definitive blood work to connect my problems, and I'm no longer being ignored by the medical community. I'm receiving the kind of care I should have been all along.

From the bottom of my heart. I respect everyone here, for their struggles and their help. We all have a common goal in mind, and that is to once again live in harmony and happiness. I pray everyone finds their way back home.

Truly,

Wolf

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dmc
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thank you for sharing.

A friend also learned she has Hemochromatosis. Discovered by her llmd who was thorough enough not to make every thing about lyme or TBIs.

It is always important to share experiences...you help others.

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poppy
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It is possible to have hemochromatosis and lyme at the same time. Not saying this is your situation, but people do have multiple medical issues at once. Hemochromatosis is genetic, lyme is tickborne. Ticks don't care if you have other problems, they will bite you anyway.
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17hens
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Wolfed!!!! I'm so glad to hear from you!!! I must say, I did worry with your sudden disappearance so thank you for tying up this loose end for me. [Smile]

Thank you, thank you for sharing your story here. Everyone's story is important and will help someone else along their way.

I do hope you continue to find your way thru this, no matter if it's lyme or something else.

Many blessings to you, Friend Wolfed,

Hens

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Wolfed Out
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poppy - You're right, people can have multiple conditions at once. And, hemochromatosis is not only genetic, but can be acquired or as a by-product of another issue. After all, there are hormones (hepcidin) that control and regulate the store of iron in the blood.

But, more importantly, the message I left was clear. Connecting Lyme with this issue, and putting it at the forefront of my priority was a mistake. My treatment protocols for Lyme were not successful and only exacerbated symptoms for me that are more likely connected with hemochromatosis or another metabolic disorder still being investigated.

-----

dmc - You're welcome, and I'm glad your friend found proper help. Maybe you'd like to connect your friend and I as this is a new journey for me. Thanks.

-----

Hens! [Smile] Thanks so much honey. You were more than instrumental in helping me through rough times. I really hope you're doing better. I e-mailed you also, feel free to respond back there. Love!

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Carol in PA
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Ahhh...mitochondrial dysfunction.
Dr. Amy Myhill has information on her site, plus lots of other stuff.

CFS - The Central Cause: Mitochondrial Failure
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

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Carol in PA
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Wolfed, I checked to see when you last posted.
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/68826#000020

People were wondering where JamesCase was.
He died two years ago.

http://www.tributes.com/show/James-A.-Derwin-86978200

[ 12-28-2011, 10:05 PM: Message edited by: Carol in PA ]

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lyme in Putnam
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I'm glad you can have some peace. I find it hard herxing, it's hard to grasp almost feeling tortured is good for you. I feel it's a necessary evil, but it's hard to take. God bless, you found some answers to work on. Good 4 u. [Smile]

--------------------
He took u to it, He'll you through

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Wolfed Out
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Carol - Thanks for the links, I'll look through them! [Smile] Sorry to hear about James. Honestly, my first thought when reading that thread again was did something go wrong with the iodine drops. I posted I was going to do it, but I never did.

----

lyme in Putnam - Thanks for the support. I guess we all have to go our own route and trust our intuition. My only hope by posting this statement is that someone may think twice about whether all the herxing they've endured for so long is really helping -- or if there's a better explanation.

I find it hard to believe people have to endure treatment for almost a decade. [Frown]

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merrygirl
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Omg- jamescase died? Does anyone know the cause? He.was a nice guy. I am unfortunately not surprised he died. He took a lot of risks self treating [Frown]

I do.think a lot of patients have tunnel vision when it comes to lyme. I also dont think blaming everythink on a herx makes sense either. Everytime you feel bad is not a herx folks.

I personally.got to the point that I have treated quite a bit, and i see people torturing themselves with this rxd treatment and 56 supplements a day, and guess what? most of these peope including myself dont make thar much progress. So do I torture myself with treatments that may not work, or do I accept what is and move on, trying to make the best of what i do have left?

Personally am chosing to just maintain. I dont do well off abx, so i am going to do maintenance abx and tx symptoms.

I dont consider this giving up. I consider it moving on. I refuse to let Lyme define me anymore and if i need more aggressive abx at future time so be it and i will do it.

So my suggestion is to rule out everything you can. Dont have lyme blinders on and not evertime you fee bad is a herx.

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sk8ter
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Mito diseases is a huge part of this...
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Wolfed Out
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merrygirl - Thanks for adding your comments to the post. I especially relate to your feelings about tunnel vision, because I had it. The mental beatdown I went through just to get recognized for having issues was exhausting, that when I finally was given a Lyme diagnosis, I was happy to take it. I'm sure almost everyone else on this board had a similar experience.

My Lyme doctor was dangerous. The reactions I had to some medications (i.e. Plaquenil) were so adverse he had never seen them before. "I've given 30 patients this medication, and they've never had the reaction you had. It must be some kind of herx," he insisted. Had I listened to him, I might be dead. I listened to other doctors who insisted Corticosteroids couldn't give me the reactions that happened, and that's how I got in this mess in the first place. I can't tell you how many times I've heard discussions about how bad steroids are for those affected by Lyme.

I also want to emphasize a big point in my statement. It's not about how many antibiotics I took, it's about recognizing the things that really did help -- the little things we take for granted.

I don't eat ice cream or pizza on the weekends and I won't have a drink for New Year's. I don't even have a Pepsi when I eat steak on the weekends. I sleep and rest consistently with no exception for excuse. If I'm tired, I won't push myself to do anything. There is no special day I give to myself for going through this treatment. This is a program I've adopted as a lifestyle so I can get better. That's how committed I am.

I know everyone isn't as blessed as me. My parents took me in, help me with food and give me the liberty to rest at will. I'm not forced to care for another person and don't have to work to pay rent. Without that, I would not have made this much progress. But, it's exactly what I needed to get this far, or else I wouldn't be on this board sharing my stories with you all today. Those little things, oblivious to me, were keeping me sick.

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Lymetoo
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That's great news, Wolfed!!! So glad you found out what was wrong!!

Tell me what you mean here...?

"I listened to other doctors who insisted Corticosteroids couldn't give me the reactions that happened, and that's how I got in this mess in the first place. I can't tell you how many times I've heard discussions about how bad steroids are for those affected by Lyme."

wasn't sure .. thanks!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
Wolfed Out,

I'm glad you are finding some good clues.

In light of some of your reactions and other things you write, you might also consider being assessed for PORPHYRIA.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?#000000

Topic: what type of M.D. tests for PORPHYRIA

Many good links here
-

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tickled1
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Carol in PA, Can you please give us some more info on the circumstances surrounding James' death? I was wondering what happened to him.
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Wolfed Out
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Keebler - Thank you, and thanks for the links. I appreciate all the support you showed me in my time of need. You're awesome. [Smile]

BTW, they mentioned that test as well. I may be getting that also, just waiting for the call. I already have the 24 hour pee jug. [Big Grin]

Lymetoo - Same goes for you. Thanks for all the replies to my threads and trying to comfort me through the process.

About your question. That last sentence seems a little out of place looking back, but I guess I was trying to emphasize the bad recommendations for treatment a doctor can make; completely ignorant to a person's unique situation blinded by their own specialty. And, backing that statement with others that have shared their bad experiences with steroids, even though it was against their best interest. I have reason to suspect that my most recent course of steroids is what pushed my condition over the hill. But, given all the newest revelations, I can't connect everything to Lyme anymore.

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Tincup
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Thanks for sharing the detailed report!

Seems you were fighting yeast and an overload of toxins too! Poor thing! Glad you decided to stop everything and reassess. Always a GREAT thing to do when in doubt, and when getting worse instead of better.

Plus, many supplements are NOT suppose to be taken for more than a few weeks at a time, so continuing on and overloading your system must have contributed to some of your misery.

Glad you are looking into the hemo situation. So sorry your regular docs never diagnosed it over the years, especially since it is the most common hereditary disorder known.

Had they done so, that would have surely helped you, your pocket book, and your future treating docs, and saved everyone a lot of headaches, heartaches and problems!

If 100 chronic Lyme patients were checked for the tons of "complicating factors" that can worsen their condition or impede their recovery, hemo would be noted in a good percentage of them.

Unfortunately, the insurers go ballistic when Lyme docs order the tests needed to complete the entire picture and by doing so, contribute to the problems rather than help.

In Maryland we've found a number of Lyme patients with a hemo disorder and are working with them to address this situation. Keep in mind it can be an either/or situation or both Lyme and hemo together, as someone mentioned.

Was wondering if you were checked for MTHFR? If not, maybe you should be, especially considering your history. (Just my thoughts.)

Here is more info if you want to do a little reading on hemo and Lyme.

https://sites.google.com/site/marylandlyme/lyme/hemochromatosis

http://www.irondisorders.org/iron-library1

Good luck and hope you feel better soon!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Forgot!

Here is some MTHFR info if interested....

https://sites.google.com/site/marylandlyme/mthfr

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Wolfed Out
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Tincup! [Smile]

Lots of good information in your reply, thanks. You hooked me a bit, because as you probably saw I'm in Maryland. So, I'm gonna wanna know more about this hemo-disorder you're talking about.

But, since you brought up these different disorders, I thought I'd be more clear about the second discovery and maybe you can provide yours thoughts.

Carnitine levels

Free: 19 (normal range: 23-59)
Bound: 62 (normal range: 15-29)
Ratio: 3.26 (normal range: .12-.39)

So, as you can see the bound carnitine is incredible high, and made my ratio of free to bound 10x the normal range. I don't know much about the condition, but I was explained that it's separate to hemochromatosis and involves being a power supply for mitochondria.

The test I most recently received was for Carnitine Palmitoyltransferase II Deficiency.

I patiently await the results and recommended treatment.

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Tincup
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Hey Wolfed,

Yes, you are right!

I saw dear old Merryland on your post, so I wanted to share that hemo is something we are finding here, not just in outer space. In other words, you aren't alone.

As for your second condition...

If I could speak about that intelligently, I'd probably be a doctor and would be spending my holiday in Costa Rica with a bunch of cabanna boys waiting on me hand and foot. (My idea of a pretty good time.)

[lol]

But alas, I sit here on my... hump... and admit I know absolutely nothing about it and would have to do a lot of research to even get to the level you are at right now.

Maybe someone else has some information for you, but if not, maybe we can all join in and help you count off the days till you see the doctor about it?

[lol]

I'd normally offer to help you research, but my time/energy is limited due to checking into a couple of dozen tests I've had lately that have come up "odd".

I hope you get GOOD answers and also hope you get feeling better, no matter the cause(s).

Hoppy New Year!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Oh.. and please let us know what you find out. We can all use an education!

Thanks!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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lpkayak
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i just want to say that there are a number of llmds who tx based on your herx. they believe you should herx a little but not a lot-it isnt good for you so they prescribe depending on how you respond to tx

also...i know i remind ppl a lot to not blame everything on lyme and to tx what is clearly something else and treatable...and i have done that in my 30 yr experience with lyme

the condition you have tho sounds like one that would be difficult to find...

it took me awhile to get dx and txed correctly-about 3-4 yrs of aggressive oral abx got me 80% better. the last 10 yrs have been maintaining on lifestyl changes and some supps

i am now dealing with some sort of mitochondrial thing. it seems to have come from me taking lipitor and diflucan at the same time. it is in the muscles. the doc and pharmacist did not seem to realize that drug combo was a problem. i get a certin very specific leg pain if-like you-i dont do everything right...esp sleep, stress, food, exercise and coq10

in my reading s i am told this is the beginning of als but that it would not be dx until it was terminal

i am foggy and cognitively compromised from 2 head injuries. i have been searching for the right kind of doc to help me...a mitochondrial specialsit -but have not been able to figure out who to go to.

i am in northeast now...can you help me find the right doc?

i hope you continue to get well

--------------------
Lyme? Its complicated. Educate yourself.

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sk8ter
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Statins are poison for mito patients to the cells...All info for these genetic conditions can be found on umdf.org.....there is a section where there are questions from patients answered by the top Genetic Mito drs in the World...this is a huge part of our disease and how we react...there are certain drugs that should NOT be taken by Mito patients and they have different MITO cocktails of certain supplements that are used...Even Mayo clinic is doing this...
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tickled1
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Is Nystatin considered a "Statin"?
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Tincup
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tickled...

No, it is not a "statin". In fact, the name of Nystatin is quite interesting. From what I understand.... and I am quite brain compromised this morning, so forgive me....

Years ago a woman in the woods discovered a root?, plant?, that grew in NY state that killed the fungus near it.

(I am more brain dead than I thought, so this is the basic concept, just don't share it as fact without fact checking me please.)

The nystatin was developed from her discovery. It is called Nystatin because...

NY- for New York

stat- for state

in- for being in NY state when it was discovered.

Get it? I HOPE so!!! I read about this years ago and thought it interesting.

Happy new Year to all!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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lpkayak
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tin-that IS interesting...it never occured to me to question if it was a statin cuz i have taken it so much w/o trouble when just a short time of low dose statin messed me up so bad

but the word sure looks like it should be a statin...more so than lipitor, or zocor...etc

maybe they are trying to hide that those are statins

it has been in the news this week how "successful" as in money-maker (not healer) lipitor is...and each time i see the positive spin on that drug it makes me sick

so many unsuspecting , uninformed ppl are being poisoned and their lives will never be the same

--------------------
Lyme? Its complicated. Educate yourself.

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lpkayak
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sk8ter-thank you for link. it will take me awile to get thru that info

can any mito experienced ppl tell me:

-is it always a downhill slope if you have the problem? or are there ways to maintain or improve the problem?

it just seems that coq10 really helps me function but it does not cure me

-what is the way they dx for sure? is it just clinical or is there a blood test or something

thanks

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Lyme? Its complicated. Educate yourself.

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Cracker Jack
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The name of this thread should be Lymeblinders goes both ways..


Wolfed Out, Thanks for the honesty. Good luck and many Prayers headed your way...


BTW, Wolfed Out your mail box is full, could you make some room...?

--------------------
Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up.
--
[hi]

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outerspace1226
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did you test positive for lyme? Reactive bands? you say your results were negligable at best..
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Wolfed Out
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Hi everyone,

Lemme know start with Cracker Jack. I didn't know my mailbox was full, so I'll free up some space after this post. Thanks for your kind wishes.

----

outerspace, I had a Western Blot done through IGeneX. The IgM test came back negative for active Lyme with a +41 and IND on 83-93. The IgG had a ++ on band 41, + on band 45, and INDs on bands 31 and 34. The doctor explained this could be a positive result, but also stated my results were equivocal. It was the co-infection testing (posting for Babesia WA-1 through LabCorp, and the HemoBartonella testing through FryLabs that pushed my diagnosis in the positive.

----

lpkayak, about 5 years ago, way before my Lyme DX, I started taking CoQ-10. I felt so good on it I was touting it as a miracle supplement, which I only discovered because I read it was good for heart health. Now that I have this new information, it puts things into better perspective.

This is all still very confusing for me, but I'll share what I think about recovery. As long as I maintain what I'm doing I continue on an upward slope. When something triggers an episode, my downswings are not nearly as severe as they once were. This leads me to believe there is healing involved that could potentially make this much easier down the road, as long as I don't take something that destroys all my progress (i.e. steroids.).

I recommend you find a Mito-Specialist since your symptoms seem to be similar to mine to roll out other potential disorders. What I've connected so far with the disorders I'm being screened for is their are different types. Mine fits into the adult-form, which is the less severe form of the disorder. Prognosis is good as long as its caught before any serious internal organ damage.

But, there are 2 conditions I'm being screened for right now. They're different, and I don't about managing the 2 together.

----

Finally, one more important note. There are some here who have problems with Epsom Salt baths. It seemed to be almost an even split on this board. You should know I had lots of trouble with Epsom Salt baths. They made me feel flu-like. There could be a potential connection involved.

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lpkayak
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wolf thankyou.

it is interesting that our test results were very similar. i had an llmd who tested a lot and mine were consistently like that for many yrs

i hope i can find a mito doc and deal with this

lately stuff happens...life threatenting stuff so i have to stop my tx to deal with that...right now i need to deal with mcs and a possible propane problem, high cholesterol and since i cant take the statins...trying to get on welchol when it gives me the same sx as propane leaks...and of course hands that are painfula dngetting worse and are practically worthless

i do wonder tho...cuz of the way coq10 makes me feel...if i deal with the mito maybe some of the other problems will go away

thank you so much for your help - im really glad fro this thread

--------------------
Lyme? Its complicated. Educate yourself.

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NanaB
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Wolfed Out,

I hope you're still on here. How do you find a mito doctor?

My LLMD thinks my daughter and I have mitochondrial disorder along with the Lyme since we are medication resistant - long story.

Anyway, he didn't know before this that my cousin's son died from a mitochondrial disorder about 2 years ago. I'm very worried about my daughter. She's much worse than I am.

What specialty would I look that up under?

--------------------
Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help.

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lpkayak
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nana-he told me to go to umdf.org and another one...it might beup aways in this thread

they were helpful

cleveland clinic is one i think

--------------------
Lyme? Its complicated. Educate yourself.

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glm1111
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wolfed out,

Please look into treating for parasites. It was the only thing that turned the corner for me.

Google parasite symptoms and check the symptom list at Humaworm as well. Could be what's keeping you sick.

Good luck,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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tickled1
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PLEASE READ:


http://www.drmyhill.co.uk/wiki/Chronic_infections_in_CFS

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Wolfed Out
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NanaB, go to mitoaction.org. Very helpful resources, a list of doctors and a toll-free help line.
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tickled1
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Wolfed Out,

So is your Mito Disease genetic or caused by infection? Can this be determined through testing?

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Wolfed Out
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tickled,

I'm in the process of figuring all that out right now. When I know more, I'll be sure to update everyone.

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lpkayak
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wolf-i just want to say thankyou for giving me this info

i am just getting into it...cant read long stuff from computer screen so print it out and read and high lite

right away i am seeing myself...they talk about statins (what set me off) and coq10 and fatigue---so many things. its like a puzzle that the pieces are finally fitting together

it will take me awhile to sort it all out and get to good doc...it looks like mass general or columbia in nyc is where i will need to go

but thank you so much

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Lyme? Its complicated. Educate yourself.

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In19944
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Wow, how sad. This disease is no walk in the park.

Best wishes Wolfed..

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lpkayak
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wolf or anyone...i found the following table of supps for mito problems but i cant understand the dosage...for ex is it: coq10-???it cant be 3.5mg can it??? any help appreciated

Table 1. Nutraceutical compounds often used with mitochondrial cytopathies
Compound Dose (mg/kg/d) Rationale
Coenzyme Q10 3.5 - 15.01 By-pass complex I defect/anti-oxidant
Creatine monohydrate 100.02 (max, 7g/d) Alternative energy source/neuroprotection
Riboflavin 2.5 - 5.0 By-pass complex I defect
Αlpha-lipoic acid 3.5 - 10.0 Anti-oxidant
Vitamin E 5.0 - 10.03 Anti-oxidant
Vitamin C 5.0 - 10.0 Anti-oxidant
L-carnitine 15.0 - 50.04 Free fatty acid transport/neuroprotection
Thiamine 2.5 - 5.0 Enhance pyruvate entry into mitochondria
4
Tarnopolsky
Supplements and Nutrition,
Although most of the above compounds are Generally Regarded As Safe (GRAS), none of the above have been proven to be safe during pregnancy. Since pregnancy is a metabolic stress and the developing fetus may be affected with mitochondrial disease, the risk/benefit ratio is unclear and must be individualized. The doses given are the best estimate from studies and empirical experience and the total daily doses should be divided twice daily. The supplements are best given with food to enhance tolerance. Gastrointestinal upset is the most common side effect (seen in about 5 % of patients with creatine for example). 1 - Higher doses are required for coenzyme Q10 deficiency; 2 - Uptake into the brain may require higher doses or a loading with up to 300 mg/kg/d for 4 weeks to increase levels by ~ 9 % 19 (consequently, using creatine in an acute stroke or seizure situation is totally useless), uptake into muscle can occur after 30 days with the above dose and 5 days with loading (300 mg/kg/d) 20; 3 - maximum daily dose should not exceed 800 mg = IU; 4 - I tend to adjust the dose to get plasma levels into the mid-normal range for the reference laboratory used.
References

--------------------
Lyme? Its complicated. Educate yourself.

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michlyme
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Thank you for your story. I come here weekly or so to see what is helping people. I feel like you that i had to take a step back from trying to "cure" Lyme Disease and look at other options.

A little about myself: diagnosed with Lyme in 1998, now i also have fibromyalgia, arthritis, gerd, hypothyroidism and ibs. (might be forgetting something)

now i have more information to see if i could have something else to treat. good luck

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Wolfed Out
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Hi mich [Smile]

Well, if you ask me, the first thing I thought about after reading your symptoms is that 2 of the 5 are inexplicably connected to your digestive system while the others are potentially linked as well.

If you haven't already, you may want to see if your diet is contributing more to your health problems then you realize. I was amazed to find how relived my joints felt after making diet changes.

Good luck to you as well, and thanks!

----

lpkayak, I don't know where you got the table from, but to answer your question the Co-Q10 dosage seems to 3.5 - 15.0. My guess is that would be milligrams.

It looks like you found a recipe for a "Mito-Cocktail."

and, you're welcome. I couldn't be happier if this post helps at least 1 person struggling for a long time just like me. I only ask you share what you find out too. [Smile]

--

In11994, thanks. Having answers will help me get through.

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Carol in PA
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quote:
Originally posted by lpkayak:
wolf or anyone...i found the following table of supps for mito problems but i cant understand the dosage...for ex is it: coq10-???it cant be 3.5mg can it??? any help appreciated

Table 1. Nutraceutical compounds often used with mitochondrial cytopathies

Compound Dose (mg/kg/d), Rationale
Milligrams per kilogram, per each day.
Rationale = the reason


Coenzyme Q10
3.5 to 15 milligrams per kilogram
Reason - By-pass complex I defect/anti-oxidant


Creatine monohydrate
100.0 mg per kg
(maximum 7 grams per day)
Reason - Alternative energy source/neuroprotection


Riboflavin
2.5 to 5.0 mg per kg
Reason - By-pass complex I defect


Αlpha-lipoic acid
3.5 to 10.0 mg per kg
Anti-oxidant


Vitamin E
5.0 to 10.0 mg per kg
Anti-oxidant
(maximum daily dose should not exceed 800 mg = IU)


Vitamin C
5.0 to 10.0 mg per kg
Anti-oxidant


L-carnitine
15.0 to 50.0 mg per kg
Free fatty acid transport/neuroprotection


Thiamine
2.5 to 5.0 mg per kg
Enhance pyruvate entry into mitochondria


The doses given are the best estimate and the total daily doses should be divided twice daily.
(For example, for a 1000 mg daily dose, divide into two 500 mg doses. Timing can be 9 a.m. and 5 p.m., or twelve hours apart, like 6 a.m. and 6 p.m., or noon and midnight. Or whatever is convenient.)


The supplements are best given with food to enhance tolerance.
Gastrointestinal upset is the most common side effect (seen in about 5% of patients with creatine for example).


====
My comments...to follow these recommendations, you need to calculate your weight in kilograms and then use your eighth grade Algebra skills to figure the ratio.

In my case, I'm going to continue to take my regular supplements that are included in the list, and look into the ones that I haven't tried yet.

From what I understand, B vitamins should be taken as a balanced group, so I will continue taking my B supplement, rather than just add extra Riboflavin and Thiamine.

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Carol in PA
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Pounds to Kilograms (pounds to kg) Conversion

http://www.metric-conversions.org/weight/pounds-to-kilograms.htm


[Wink]


100 lb = 45 kg
150 lb = 68 kg
200 lb = 91 kg


Coenzyme Q10
Take 3.5 to 15 milligrams per kilogram, daily.


A 100 lb. person should take 158 to 675 mg of CoQ10, daily.

A 150 lb. person should take 238 to 1020 mg of CoQ10, daily.

A 200 lb. person should take 319 to 1365 mg of CoQ10, daily.


I buy 100 mg capsules from iHerb.com, the dry CoQ10, which is less expensive than the stuff in an oil base.
However, you do need fats for the CoQ10 to absorb, so I take the capsules when I take fish oil.
(Take your Vitamin D now too, as that needs fat.)


The recommended range is pretty wide, so a 200 lb. person can take 3 to 14 of the 100 mg capsules of CoQ10 daily.
(Divide into two doses, but even if you take one dose, it's better than nothing.)

[ 01-05-2012, 05:23 AM: Message edited by: Carol in PA ]

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tickled1
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So would it be safe for me to assume that if I do have positive test results for EBV, Mycoplasma and equivocal for Lyme, that Mito Disease is not my problem?

Are these things ruled out with Mito patients? Or, can these diseases trigger irreversible Mito Disease? Just trying to figure out if this is a tree I need to bark up or not. I am incredibly fatigued and my adrenals are shot, have hypoclycemia and other Mito symptoms as well but these Mito-type symptoms aren't necessarily Mito Disease, do I have that right? I'm so confused [shake]

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lpkayak
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oh man carol...i have a masters plus 60 but have not been able to do 4th grade math since getting hit in the head...

i can barely figure the tip. guess its dangerous for me to be alone.

i couldnt make the table do that. not so good with the computer either

so thank you somuch for the breakdown

coq10 is expensive but i think itis true that quality id impt with this supp more than others

i feel the best on dr m's ubiquinol...but cant always afford it

the other important one for me is lipoic acid...i say impt cuz i really feel worse if i dont take it. i'm taking 2 300mgs a day now...but i really dont understnad the chart enough to know if that is right

thaqnk you so much again carol...

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Lyme? Its complicated. Educate yourself.

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lpkayak
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you guys...over in medical horsefly started a post-its actually about flatulance(sp) but the second post on the thread has a really good link and about 1/2 way down it starts talking about mito connection...a lot of info.

i drove south and was able to get all but one of the mito cocktail supps...

hope they help...

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Lyme? Its complicated. Educate yourself.

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Muffin123
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Quote from Maryland site:

"AVOID SamE, an over the counter product as this S-adenosyl-methionine can further inhibit MTHFR"

Does anyone have any thoughts on this quote. I have MTHFR and was told by my doctor to take 1600 mg of SAMe

--------------------
Muffin123

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lpkayak
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carol...you said you would keep taking your b compex instead of getting ribo or thia alone

im supposed to take 150-285 of each of them twice a day

if i do it with the b100 i would have to take 2 am and 1 pm i guess. do you think i would be taking too much of the other B's ???

it has taken me this long to get everything and figure most of it out

thanks

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Lyme? Its complicated. Educate yourself.

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poppy
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I always wonder when I hear a post like this: what is an unrelated additional problem and what is caused by lyme or coinfections. We know that these diseases mess up our physiology. That is why they cause disease. And the ways they do this are many.

For instance, say that mitochondrial disease can be caused by an infection. But maybe it might be caused by other things.

I once had a doctor who said his goal was to make me whole. By that he meant not only treat the lyme but also treat the problems that the lyme caused. And also treat conditions unrelated to lyme that were discovered during the diagnosing.

Not to harp on lyme for wolfed out, but having tickborne diseases like babesia pretty much ensured that he had a tick bite.

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Carol in PA
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Previously, I said,
From what I understand, B vitamins should be taken as a balanced group, so I will continue taking my B supplement, rather than just add extra Riboflavin and Thiamine.


quote:
Originally posted by lpkayak:
carol...you said you would keep taking your b compex instead of getting ribo or thia alone

im supposed to take 150-285 of each of them twice a day

if i do it with the b100 i would have to take 2 am and 1 pm i guess. do you think i would be taking too much of the other B's ???

You could take the B100 and then some additional other B's later.
I was trying to point out that you don't want to take big doses of only certain B vitamins, as an imbalance can cause problems.

(Pffft...I cannot remember which B's and what problems. Other knowledgeable people here have discussed it before.)

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lpkayak
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hmmmm. so complicated when you are messed up cognitively. for yrs i have taken extra folic acid to help with weight loss and extra b6 to help with sleep. so i was sort of doing it anyway...but i didnt have numbers in front of me saying what i should take.

i guess i'll try it and see if there is a difference. good or bad.

the original pain i got from lipitor is back and it really worries me. my first hint that mitochondrial issues were a problems for me was studying about what lipitor can do to some ppl.

at first the supps i took made a big difference...but then it leveld off. the pain does not put me back in the walker...but it is a hint that if i dont take care of it it will. it also stops me from exercise -walking and riding as much as i used to. and weight is a big issue for me.

so this pain i get that i blame on mito problems is a big issue for me.

i'll try the protocol and see what happens.

carol-thank you so much for coming bqck and babysitting me

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Lyme? Its complicated. Educate yourself.

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Carol in PA
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CFS - The Central Cause: Mitochondrial Failure
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

Read this when you have the energy.
Dr. Amy Myhill has lots of excellent information.


.
If you're getting the Lipitor pain again, are you taking CoEnzyme Q10.
Ubiquinol is supposed to be better, you only need half as much.
However, they charge TWICE AS MUCH for it, so you're no farther ahead.

Doctor's Best, High Absorption CoQ10, 100 mg, 120 Veggie Caps
Our price: $12.95
http://www.iherb.com/Doctor-s-Best-High-Absorption-CoQ10-with-BioPerine-USP-JP-100-mg-120-Veggie-Caps/15658?at=0

That's the one I've been buying.
It's dry powder in capsules, not in oil, so I take it along with my fish oil, as CoQ10 needs the oils to be absorbed properly.

Posts: 6906 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
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i had stopped ubiq from mercola for awhile and was using NOW brand

a lot of NOW stuff works for me - but i went backward

i am back on 200-400 of dr m's ubiq...i know i may have to put it up from that

it is expensive...but i am not ready to not be able to walk

i got mixed up when i had my regular supps then had to add mito ones (i was using graveline as resource) then another high lipid test so upped the supps to try to lower that

soooo much. hard to plan...with food-without...probiotics when abx when

and i also had worse reflux and it was hard to figure from what...

so i am trying agin...after first new batch reflux was bad...i'll have to see if i can figure that out

thanks again

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13705 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
   

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