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» LymeNet Flash » Questions and Discussion » Medical Questions » remission/trial didn't last long for me

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Author Topic: remission/trial didn't last long for me
n2themystic
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Sick for 11 years. Undiagnosed for 8.

Treated 1 year without llmd then last 2 years with llmd.

After seeing the llmd and having aggressive treatment for 1.5 years I started feel better. I got to a point where I felt really good for one month.

llmd deccided to take me off all pharma meds but kept me on white and cowden herbs.

Continued to feel good for another month.

Then recently I felt symptoms I had not had in a long time. I tried to ignore them and be positive and hope they would be gone the next day.

Its now been 2 weeks and they are getting worse each day. My legs have a deep muscle ache and feel jittery. Headaches, brain fog, nausea, fatigue and just general overall crappy fluish feeling.

I have a call into my llmd. I assume they will want me to go back on meds. Mentally I am not there yet. I know I probably need to. I got a taste of what it felt like to feel good and want that back.

I am very frustrated but not surprised. Its been an emotional week and I was doing my best to not admit what was happening.

I am also thinking of trying different treatments like UV, Rife, Ozone, homeopathic before going back on the meds. I figure maybe they will help and if not and I crash more then I can go back on the meds similar to how Dr. B let himself get.

Today was so rough I thought about realistically for the first time of quitting my job and cashing in my 401k to be able to pay my medical debt, bills, survive and just concentrate on getting better without the stress and demands of a job.

I had thought of this many times before but never considered it seriously as that nest egg is all I have and I wanted it to be a last resort.

I know I need to give this lots of thought and not when I am feeling as badly as I currently am but it is really tempting.

Has anyone heard of success of someone quitting their job and withdrawing from their 401k because of lyme, babesia, etc and were able to qualify for a hardship withdrawl to avoid the 10% early withdrawl penalty?

I know this was long. Thanks to all who read.

Posts: 186 | From colorado | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
Dogsandcats
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I had one month of feeling better. I told the dr that and he said better is not well. I choose to go back on meds, for now.

I am not an expert, but I believe there is going to be more than 10% fee. Please check with someone before you do it.

Try and give yourself sometime before making a decision. You aren't feeling good and, with good reason, you are disappointed.

I am sorry you are having to deal with this again.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

Posts: 1967 | From California | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
BoxerMom
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Don't make any big decisions when you are scared and relapsing.

If you get back on abx quickly, it is likely your symptoms will begin to improve and you'll be feeling good again.

I know it's a drag - mentally, emotionally, physically, financially - but once your symptoms are controlled again, you will do better decision-making around alternative treatments and withdrawing from your 401K.

This illness comes with relapse. There is no guarantee that you would not have relapsed even if you weren't working.

Can you cut back hours, or take a medical leave? That would leave your 401K intact.

I took a short abx break recently, and I relapsed right away. I feel better now that I'm back on meds.

--------------------
 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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"Has anyone heard of success of someone quitting their job and withdrawing from their 401k because of lyme, babesia, etc and were able to qualify for a hardship withdrawl to avoid the 10% early withdrawal penalty?"

I've heard that that is very tricky. You must be very careful if trying to do that.

--

Just remember that Dr B did got well and so can YOU!! [Smile]

Sounds like maybe babs is still an issue for you.

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

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
n2themystic
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Thanks for the replies. I won't make any hasty decisions for sure. I already told myself to at least wait to see how things are in January.

I am a network engineer and my job is very technical. The company is in the middle of a huge 1.5 year project and I am the lead on several pieces of the project. Fortunately I work from home most of the time although I am on the computer/phone 8-12 hrs a day.

Its getting very stressful and hard to do my job. On days I am not doing well its all I can do to make it through the day. I sleep my lunch hour which helps. Lucky I can do that. I stress that I will get in trouble for something not getting done. Or letting them down. They have been good to me through the illness. At least my manager has.

But like you said I can get better and I just need to get back into my treatment and remain positive. If I can get back to feeling good on the meds I can do my job most of time.

Lymetoo- which of my symptoms make you think its babs?

Thanks again! I am feeling better about going back to the meds.

Posts: 186 | From colorado | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
jlp38
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Bummer. At least the treatment you've been under seems to have helped, even if you can't stay off it. I'm planning to try photons shortly, probably the pe1. Let me know if you decide to go alternative. I dont know if it would be feasible to share equipment, but if/when i get one I'll let you know in case you're interested.
Posts: 707 | From Colorado | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
lymeinhell
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Just wanted to throw in a another reason not to tap that 401K - regardless of the reason, it will now be taxable as ordinary income, at the federal and state level this year. So in addition to 10%, you can also kiss up to 50% goodbye in taxes.

Hopefully going back on abx will have you feeling a bit better soon. Perhaps talk to your doctor about some adrenal support and even Rhodiola, which promotes a feeling of calm and protects your body from the effects of stress.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
Tammy N.
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n2 - sorry to hear of your relapse. It is not uncommon. Most people who go off meds crash (that's even according to the highly regarded Dr. H). That tells me something is missing from treatment. It's not just the bugs that need to be killed, but it's the inner terrain that needs to be corrected.... that's what allowed things to get out of control in the first place. IMO main issues of consideration are: mold, heavy metals, deficiencies, dental issues, parasites, detox abilities/inabilities. (I had NO CLUE mold was one of my primary issues; same with dental issues... had no clue). I would study up on Dr. K. His approach very comprehensive. And because of his generosity of publishing his teachings and protocols, you can often find an open-minded doc nearby who is willing to follow along with Dr. K's protocols. Also, I would look into allergie-immun therapy. And I think the photon therapies seem very promising. Certainly worth looking into more.

Regarding working - my advice is to keep on working. I think it's important to remain engaged in other meaningful avenues (and not just Lyme). Plus it will keep your finances flowing, which you are going to need. Many people are looking for good jobs, I wouldn't get rid of a good one. I stopped working for about 3 years in the late 90s. I don't plan on doing that again. I will always try to work, even part time. It's a positive distraction. And I think it's important for balance. Otherwise I would not be thinking of anything but Lyme and sickness.

Good luck with getting yourself on track.

Posts: 2238 | From East Coast | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
nefferdun
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i don't know anything about 401Ks but I am very familiar with relapsing! So frustrating.

Get back into treatment and hang in there.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lymenotlite
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I'm in the same place. After 2 years and 4 months, I have been taken off antibiotics for a trial run. After a couple of weeks I started getting slight headaches but since I have a good herbal lyme formula, I started taking that and it is handling my symptoms.

I have months more of the herbal extractions left since I was making them myself and made a lot so I plan on continuing with them for months if necessary. I really need a break from the drugs.

Posts: 705 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
   

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