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» LymeNet Flash » Questions and Discussion » Medical Questions » Really scared--husband has developed chronic fatigue syndrome from Lyme treatment

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Author Topic: Really scared--husband has developed chronic fatigue syndrome from Lyme treatment
Janice70
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My husband did not have fatigue before starting antibiotic treatment in December 2008. Now, he cannot go on a slow daily walk for more than 10 minutes without developing crushing fatigue, feeling sick (dizzy, woozy) the same day, and very sore muscles the next.

My husband thinks this is from the antibiotics getting to his deeply embedded Lyme bacteria (he was infected as a child, started getting some symptoms in 2001).

I am worried that it is something much more serious than that, which might not go away. I'm worried that all the drugs (a lot of them at high doses) is poisoning his body. His HLA test showed he has trouble detoxing. He started cholestyramine in February.

All symptoms have gotten worse since starting treatment in December. Many new symptoms have started. He has been extremely ill for 3 months straight. He still goes to work, but I don't know how. He has to hide his retching often during meetings.

He also takes Valtrex and H6 transfer factor for very high HHV6 (10.3) He also had a bad candida problem, and is taking a lot of things for that.

I'm really scared. My husband is worried too, but is currently trusting his ILADS LLMD.

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Keebler
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-

Janice,

I know this must be very hard for you both. Three month's treatment is not even half-way there (at best). Still, I understand your concern.

My main concern is if your husband is employing enough liver support to protect again the abx. If so, then that is good.

If not, it is vital to have the best liver support possible during treatment as the liver being stressed is much of what results in added fatigue.

However, no matter how you slice it, this is a very rough treatment. Lyme is a very toxic illness and the only way out is through.

That said, you might ask your LLMD about incorporating some of the supplements from Zhang's book. Some people do better with allicin added.

--

Be absolutely positive that the cholestyramine is free of aspartame. Aspartame/Nutrasweet/Equal is neurotoxic (as is MSG).

I assume since your husband is working with an ILADS LLMD (and thanks so much for providing that so I did not have to ask) . . . that his self-care is top-notch.


some of the abx can cause dizziness (mino, zith and biaxin are the worst). See the thread below on what might help with that.


I will also post a thread on porphyria -as if your husband has trouble detoxing, there may be some methods there that will help - or he may want to look at the links on secondary porphyria.


NAC might be one supplement of choice for liver protection. Schisandra might be another as it helps the C P-450 liver detox pathway. It's all in that porphyria thread.


AND - I will also post a cardiac thread. For some patients with exerciced induced fatigue (I am way too tired to finish so parden spelleing) . . . .;


Good luck to you both. There are answers. There is a way. It just may not be apparent.


================


NAC and ginger may help the vertigo. B-6, too. Beyond that, here are some good links.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801


Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links


=====================


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=071168


Topic: PORPHYRIA LINKS - Re: Cytochrome P-450 liver detox pathway


==================


Thread below relating to the exercise-induced fatigue (but also remember that is also a liver connection. If the liver is stressed, exercise will release more toxins and create more fatigue. Infrared saunas and massage can help).


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325


Topic: To everyone with cardiac symptoms please read!


===================


Many LLMDs incorporate some supplements from this book:


http://tinyurl.com/5drx94


Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang


web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Janice70
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Keebler, thank you so much. As far as I know, he is not taking anything for liver support. I will look into your suggestions! You have given me some hope.

He recently had some blood tests.
The result for "Hepatic Function Panel (7), Bilirubin, Direct" was normal: 0.08 mg /dL with a reference range of 0.00-0.40.

Does this give you any useful information?

Also, he takes the Questran with sucrose, not aspartame. Our family does not eat any artificial sweeteners.

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Janice70
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Keebler, I read the link regarding porphyria, and it said Sulfonamide-antibiotics should not be taken!

His fatigue got A LOT, LOT worse after starting Septra 6 weeks ago! Could this be the cause? We previously thought it might be a Questran herx, since he started that at the same time.

We don't know if he has porphyria, but this could be it.

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Keebler
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-

First, yes, indeed, Questran can cause a herx. When I took it, I could barely function at all and vertigo was far worse as was muscle weakness.

It is vital to have vitamins/minerals taken apart form Questran, otherwise a person can become dangerously low in vital nutrients as Questran just glooms onto everything.


--

Not taking any liver support? Right there, you may have your answer. But not all liver support goes with all Rx. Still, since Rx are so hard on the liver, protection and support are vital.


While milk thistle is the most well known, there are many options with this.


---

Sulfonamide-antibiotics should not be taken ONLY for patients with Porphyria or with problems with the C P-450 detox pathway.

These tests may be hard and not always accurate. You can look over the porphryia organizations' sites to determine if your husband might have some of the signs of this.

Alcohol intolerance is one sign.

While lyme patients are not supposed to have any alcohol - but, if before lyme, he was very sensitive or had problems digesting red meat or other medicines . . . those are some hints - or if any history of family members having severe reactions to Rx.


Some porphyrias involve problems being in the sun (but not all types).


I was dx with 2 kinds of chronic porphryia. You can read more about that - and how I've been finding my way around at that thread.


For someone who might have porphyria (even if secondary to lyme), treatment can be much harder. Still, there are ways to work through this. (Zhang's book or a RIFE might be good things to explore). Still, as infections can make porphyria much worse, infections must be addressed adequately. And that is the catch.


Most MDs know very little about porphyria and what they think they know is often cliche. Not everyone's urine turns purple for all kinds of porphyria (there are at least 11 kinds).


I find this a fascinating area of study but one that is very complex and the effects are much underestimated by doctors.


Good luck - the clock is approaching midnight and too much light now into this vampirette's eyes! Must fly, now.


-

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Gabrielle
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The same happened to me. When I started treatment I was not so fatigued - now, it is my main problem.

I found that the problem got bad when I took

1. Bactrim - I have problems with the C P-450 detox pathway but I didn't know it at that time.

2. With fluorquinolones - They cause me a crushing fatigue which improves a bit after stopping them but always I stay behind a bit worse than before I started them.

For these two abx I'm absolutely sure that they are culprits of my fatigue but I suspect there were others which had a less dramatic effect but nevertheless damaged my body.

Nowadays, I recommend everyone to check his detox abilities before taking longterm abx.

Gabrielle

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painted turtle
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Lyme treatment gave me a fatigue I never had and it has not gone away.

But it helped with a lot of other disastrous things that I would not have been able to live with at all.

Don't know the science behind it but I think the treatment, while absolutely necessary

Can potentially cause a cascade of things in some people.

Especially if there is a problem with liver detox

--------------------
www.lymefire.blogspot.com

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polar blast
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that is the price of die off! it will go away when the load is down! it does take a long time so just relax
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Gabrielle
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quote:
Originally posted by polar blast:
that is the price of die off! it will go away when the load is down! it does take a long time so just relax

I'm not so sure about that. I treated many years with abx and my load is down because there are no more herxes. Now I'm 7 months w/o abx and my fatigue is not better.

I rather think it's collateral damage.

Gabrielle

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sixgoofykids
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You might look at the biotoxin.info website. He talks a lot about cholesytramine/questran. He says it can significantly worsen Lyme symptoms. Lots of interesting stuff there.

--------------------
sixgoofykids.blogspot.com

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clairenotes
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Great advice so far... just wanted to say that viruses themselves can cause fatigue. Perhaps he needs to give the anti-virals more time?

Claire

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nomoremuscles
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I would like to add that this is what happened to me. My Lyme and co's started out with an acute onset of very severe neurological symptoms. Abx trx slowly knocked down these symptoms, which were unlivable, but as they left they were slowly replaced by CFS symptoms. The original Lyme syx, awful as they were, still allowed me to work and live a life, if a limited one. This CFS syx did not.

My trx started in 97. I was not treated overly aggressively, but followed the standard Lyme, babesia, and bartonella protocols of that time. Slowly, as the neuro and brain cleared, the gut went off and the body got weaker and weaker. I ended up completely disabled.

What caused this?

I'm not sure, but believe it had much to do with my gut flora, as once the gut went off everything else followed, and followed fast. I became extremely reactive and weak. I am sure the Lyme and friends are still active, and likely at the root of things, but cannot dismiss the fact that my last 3 years of abx therapy (ending in approx 2006 -- if memory serves) left me in much worse shape that before I'd started. Instead of improving, after each herx I slipped further down. This is not to say that I think abx therapy is bad; I do not. Only that much is still unknown.

Like all things with this disease, nothing is simple or black and white. There are many risks. I'm not suggesting that people shouldn't use abx, but am telling this story so people can see the potential downside.

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TerryK
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My fatigue increased a huge amount with IM ceftriaxone. I had been on a lot of oral abx over the past 3 years but this seemed to push my fatigue beyond anything I had experienced yet.

I found noni juice from trace minerals helped the fatigue a lot but I didn't start it until after I was off the ceftriaxone and I was still so tired. I decided I had to do something. I was off noni for awhile and did OK but recently back on oral abx for lyme and just this morning while sitting here barely able to get off the couch, I realize the fatigue is back almost full force again.

I just got a new bottle of Noni so I'll start back today. I can't say it will help your husband but thought I would mention it because it helped me. We'll see how I feel after starting it again today.

Is your husband taking actos? It is used along with cholestyramine to help mitigate the exacerbation that cholestyramine can cause for lyme disease patients. It is also mentioned in Mold Warriors that it is a gene therapy of sorts for people like us who have the HLA genetics that make getting rid of biotoxins difficult.

I read in the Mold Warriors book last night that cholestyramine won't help much until MARCONS are taken care of in the nasal passage. Ugh! One more thing to figure out.

I think if I were in your husbands situation I'd ask for an ILADS LLND or a lyme sympathetic Naturopathic Doctor who can work with your LLMD and help your husband mitigate the negative effects of treatment.

Consdier using drainage remedies. They helped me tremendously. I used Pekana drainage remedies on the advice of my LLMD. Intracellular toxins can be an issue for lyme patients. Mine were very high according to a test that my LLMD ran a few years ago.

So sorry you and your husband is going through this. Especially trying to work through it. Please tell him we are sympathetic and our thoughts are with him.

Terry

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Janice70
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Thank you everyone, for the information and support!
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Bugg
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My story is very similar to all of those posted above...Additionally, after treating with long term abx, I developed (new symptom)heavy legs/no stamina/severe bone-crushing fatigue....I can relate to the earlier poster who said this was even more debilitating....After searching deseperately for answers and trying everything, I finally found the source of my problems....low levels of magnesium and low levels of vitamin D...

If you read any of the medical abstracts re: low vitamin D, Chlorestyramine and Rifampin in particular can cause low levels of vitamin D (not to mention the dysregulation of 1,25 D that most lyme patients already have which strips the body of 25 OH(d))....

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Lymeorsomething
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I didn't read all of the above...but check his iron levels as well as hormones, particularly testosterone, thyroid, adrenal....all may be affected in lyme and co's at times....

--------------------
"Whatever can go wrong will go wrong."

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CherylSue
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Valtrex made me very sick as does most meds. I had to find the RX that did not give me such toxicity.

It could be the combo of meds and supplements.

Just a thought.

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