Please help. . . I am quickly losing hope

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kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 4/25/2009 8:11 AM (GMT -6)   
Hello,

I've am six weeks into Mepron, Plaquenil, and Zithromax and am also doing Zhang protocol along with it. I have neurological lyme (ms/als symptoms). I have had previous treatment off and on since last August, never for this length of time. I feel as though I am losing hope with this. . . my symptoms remain constant, only stronger with treatment. The only new symptoms since treatment has been a week of night sweats and and three nights of upper back pain in right shoulder which kept me from sleeping.

I feel weaker as time goes on and I'm not sure it is due to the treatment or really the progression of this or some other illness. I've been tested and retested for other neurological diseases (ms/als) and have been cleared of these supposively.

I've been doing my best to detox with epsom salt baths and lemon water and trying to be more conscious of my diet. I don't know how much more I can handle or how much more my family can handle. I guess my question is, Is it normal to feel worse throughout treatment? It seems like at some point I should feel I'm turning a corner.

Thanks.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/25/2009 10:34 AM (GMT -6)   
I am sorry you are feeling so bad. It is very normal to feel horrible when you start treatment. An indication that the abx is working is you feel much worse (herxing) or you feel better - staying the same - you should try something else. It sounds like you are having some herx reactions which is good. I hope you see the light at the end of the tunnel soon and begin to feel better. I did not get as sick as you are before I started treatment but everything takes time. I have been at this for over a year.
You must be very careful with diet and lifestyle. You cannot eat any sugar, alcohol, processed food, refined food including white flour and you should limit red meat (contains toxins) and foods high on the glycemic index which convert to glucose quickly. Bacteria thrive on sugar. You should supplement magnesium (chelated form) and B12 and B6 which are depleted and worsen neurological symptoms. Ground flax and fish oil are full of omega 3 fatty acids and help reduce inflammation. At some point when you feel better you can try a detox with herbs to get rid of heavy metals which weaken your system. Everything should be about making you stronger.
Be sure you are evaluated for co-infections such as bartonella and babesia. Tests are not reliable. You need a knowledgeable doctor that will look at your skin and your history of symptoms.
Hang in there! I feel pretty bad right now myself but we will overcome this.

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 4/25/2009 10:43 AM (GMT -6)   
Are your symptoms steadily worse, or do they go up and down? What illnesses are you being treated for? Based on your medications, it sounds like lyme and babesia. I'm not familiar with the Zhang protocol. Are you taking artemesinin (sp?) too? If not, I would suggest that you talk to your doctor about that to help treat the babesia.

The night sweats suggest an increase in babesia symptoms. Was the shoulder soreness in the joint or the muscle or something else?

Based on what you've written so far, something doesn't sound right, but don't lose hope. Your symptoms shouldn't be getting worse, but maybe you're having a Herx reaction. It's hard to tell sometimes what is a herx and what is a worsening of symptoms. I've never tried the epsom salt baths, but I've seen complaints from some people who say that those make them feel worse. Maybe you should give those up for a little while to see if that helps or not.

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 4/25/2009 11:04 AM (GMT -6)   
Thanks for your replies and encouragement...

I am being treated for lyme and babesia. The zhang protocol is a series of chinese herbs that can be taken with antibiotics or alone and are supposed to be curative. I am taking artemisinin as part of this protocol.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/25/2009 3:25 PM (GMT -6)   
Kelly,

I'm so sorry you are feeling worse. I just wanted to add that a lady that started going to my LLMD for Lyme Disease was feeling really bad just like you. What happened to her was that she was full of toxins. In my opinion, I don't think the bathes work that well. I've had a foot detox done recently and I felt so much better. It made a huge difference and you should have seen the nasty stuff that came out! This is NOT the foot pads. This is the foot detox where you put your feet in water and a metal piece is put in between your feet. If you know anyone that does this, sometimes salons do, get it done!
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:
-Chronic Lyme Disease
-Hashimotos Thyroiditis
-Ulcers
-Hypoglycemia
Medications:
-Biaxin 250mg to start (starting slow and working my way up)
-Mepron
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Probiotics
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 4/25/2009 4:54 PM (GMT -6)   
If I can make it, you can make it. You sound like you are in the midst of some of the worse LD has to offer. Take plenty of baths, wrap in a comforter or loose blankets and hang in there. Take your meds. as long as you can tolerate them.... if/when you can't call your dr..... even if it's on his/her emergency line.

All the best - hang in there, this is only the worst.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/25/2009 5:25 PM (GMT -6)   
Hi kelly1234 -

I send you a maga bunch of energy and healing vibes!!

As to the detoxing: it took looooong for me to find the right approach, to learn how to get it out of tissue and out of my body - and coordinate these two things !!! Needless to say that I felt like tortured in the beginning until I found out what works for me; I did mostly foot detox baths when doing baths; be sensitive with your body when getting the poison out! I needed much more sleep than usual at some time with this. I see big chances to get better with propper detox - that needs time though and maybe you have to change your route until it fits for you. Hang in there!!
Greetings from dorit

kelly1234
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 4/25/2009 10:16 PM (GMT -6)   
Thanks for the replies/advice. I do feel like I'm in the middle of a very strong neurotoxic dieoff. I had a ionic foot bath more than a month ago and was shocked at what came out. I do know my system has a difficult time releasing toxins. I am under the care of a llmd who wants me to increase the mepron and add flagyl for 10 days to attack lyme cysts. I don't know if my body can take it, but from what they tell me, unless it kills you (more or less), they want me to stick with it. Every time I've gone on the meds, I've had an extremely difficult time. I've got this system inflammation of my nervous system. Maybe going on the Zhang protocol and not abx would be best for me. For now, I'll try to gut it out.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/25/2009 11:10 PM (GMT -6)   
Kelly,

From what I was told, you should start off doing the foot detox at least 3 times in the first week to get the full benefit. After that, I think it's twice a week then down to once a month.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:
-Chronic Lyme Disease
-Hashimotos Thyroiditis
-Ulcers
-Hypoglycemia
Medications:
-Biaxin 250mg to start (starting slow and working my way up)
-Mepron
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Probiotics
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 4/27/2009 10:46 AM (GMT -6)   
Your week of night sweats says it all. Don't ever forget the week of night sweats you are experiencing. Because there will come a time down the road when you may be confused about what you are actually treating. The reaction you are getting is what you want. It definitely sounds like babesia and i wouldn't let up. Adding flagyl sounds a little excessive at this point. You will experience a few months of hell but things will get worse before they get better.
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