Help! Relapse of neuro symptoms. What does this mean?

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LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/31/2009 5:23 PM (GMT -7)   
two weeks ago I was doing pretty good. about 60% normal. Than after apprx 3.5 months of no severe neuro symptoms, they came back. Not quite as bad as in the beginning, but about 80%. Increased brain fog, dizziness, blurred vision, floaters, aura, sound sensitivity, eye burning, head pressure, stiff neck, depression, etc.
 
I've been on the same meds for months now without anychanges.  I was starting to think that maybe there was a light at the end of the tunnel, then, BAM! mad everythings bad again.
 
Is this normal?  sad    Could I be developing antibiotic resistance?  Yikes
 
I told my LLMD and she's added Rifampin, lomatium, andrographis and Alinia for parvo.
 
anyone relate????
please give hope
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/31/2009 5:53 PM (GMT -7)   
Dear LupnerRN,

Am I glad to read your post. Not because you're relapsing, but because I am too. And I empathize.

I don't know what I've done to myself.

I'm okay most mornings -- a little foggier. The day goes on and I get worse and worse and worse.

But now I've relapsed beyond belief.

Dizziness is really bothering me.

I need to stop all chocolate, caffeine, and chips.

Maybe this is all my fault.

I have eye issues. God I thought I was through with it two weeks ago. And here I am posting and whining yet again.

Hoping for a cure was a name I gave myself several months ago. I thought I caught this "early". Boy, was I wrong. What's next ? I try not to take a thing for granted anymore!

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/31/2009 6:23 PM (GMT -7)   
Hoping,

How long did you have symptoms before your treatment?
And how long has your treatment been.
do you have ld and co-infections?

I thought I caugth it early also! I thought maybe I only had it less than a year, but must be longer. :-(
I've been on meds now for 6months. Which is statistically a short time. But I was really hoping 6 months wouldv't been it!

oh - I just remember I need an eye exam from being on Plaquenil! better do it.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/31/2009 6:47 PM (GMT -7)   
Rash occurred in June last summer.

Prescribed 10 days doxy. Terribly sick -- from doxy though, nothing Lyme related. Just G.I. symptoms.

Tendonitis would come and go soon thereafter. Followed by brain fog in Aug. Went back to doctors in July and Aug. Sent away with Ambien, which made me irritable. Tests negative.

Sept. returned to a friendlier doctor -- insisted on test, tested positive for Lyme only. WB and two bands IGM only (no IGG) still results sent to health department.

Now on Biaxin and also Doxy.

I have a prescription for Plaquenil. I need clearance before filling from eye exam. I'm experiencing a surge in eye issues like flashers and floaters that are very annoying. But, I don't believe it's a big deal, just a Lyme thing.

Just wondering if you'd recommend plaquenil and if you would mind sharing your experience.

Thanks I'm four months in and yeah, since I only just got it (well, who knows as my antibodies were really low as if I've had it for a few years they say), I thought I'd be done.

We have a lot in common. I strongly suspect I have Babs. I have had night sweats and bad air hunger herxing.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 2/1/2009 8:26 AM (GMT -7)   
I had something similar happen to me. I was doing very well with only mild monthly symptoms. I was using herbs, occationally hitting the ABX when my symptoms seemed to worse more than usual such as during the eclipse. Then I suddenly began to deteriorate, the herbs obviously quit working and were in fact making my insomnia much worse. I went back on doxy December 21 and had over a month of mental fog, depression, irritation, spasms, headaches, chills, pins and needles and stiffness here and there. I made an appointment to see an LLMD and am leaving for the trip tomorrow. However I currently feel "just fine". What continues to bother me and has become a new normal is very dry irritated eyes, pain in my shins and lack of motivation.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 2/1/2009 8:39 AM (GMT -7)   
Nefferdun,

For the dry eyes, remember to blink often when using your computer. Also, punctal occlusions provide some relief.

Finally, there are really good drops out there.

Dry eyes is VERY common -- esp. in the winter -- may not be a lyme symptom.. . Myabe something treatable.

Regarding the lack of motivation. Is there something you need to do? Write it down. Set a goal.

That helps me for some reason.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 2/1/2009 2:28 PM (GMT -7)   
have heard that plaquanil has helped many on this forum. However for me it caused a "Stevens Johnson reaction" after only 4 days on it. I was close to death and spent 7 days in the hospital last year and it took many months for my body to recover so I could fight the lyme and co-infections again. I lost the first layer of skin from my entire and I mean entire body in every place concievable. It took months for me to stop peeling and looking like I had 3 rd degree burns. I was told some people cannot take this drug because they absolutely cannot metabolize it and it is not an allergy. It is because people like me lack a certain protein to deal with it and it is poison. I have taken many other meds since them including IV and am getting better - I hope you do too. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/12/2009 3:07 PM (GMT -7)   
hey all,
extreme fatigue lately and then my good friends husband died in a house fire while dealing with his dad's estate who had died 2 weeks previously. Somehow, my lyme issues weren't all that horrible anymore.

Hoping, how's your breathing doing? What's your LLMD say? The plaquenil has been good for me so far. It helps the Biaxin work better. I'v been on it for 4 months now and just had my first eye exam. It was fine. Plaquenil can give retinal issues, but my eye doc said he's more worried about the Lyme effects on the eye than the Plaq. I would go ahead and start the Plaq and get an eye exam if you've had retinal problems in the past. The more I'm reading about the co-infections the more it's sounding like we all have to have them!! Talk to your LLmd about it. My co-infection panel from IGenX was negative but I have bart, bab and ehrl symptoms and are now being treated for them.

Nefferdun - how was your appointment?
My eye doctor gave me some "soothe" samples and they work pretty good.
I've had pain in my shin's before too. It is always in the lower outside area between the bone and the calf muscle. Very wierd, ain't it?

Minerals - I'm so sorry to hear about the reaction you had to Plaquenil!!!!! I can only imagine what you must have gone through. Are you skeptical about all meds you start now? I pray your skin is healthy now! wow. Once again, I'm sorry you had to go through that. Like Lyme doesn't suck enough. Man, are we going to be super hero's after this is over or what? I know you should be!

hugs to all - Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/26/2009 8:58 PM (GMT -7)   
Abx alone do not work. They kill about 100 good bacteria in your body that it needs to function. If it is not working then do not do it any more.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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