Besides making new friends and gathering new information, it would also be a good way to find a lyme literate social worker or psychologist to talk to for extra support.
I joined a closed lyme Facebook group for people in my geographic area and friends/members have been sharing counselors, acupuncturists, dentists, and more.
Is there a friend or family member that you can confide in? Try to get all the support you can right now.
We all understand your pain. It is horrible to have to live with these symptoms. You seemed so hopeful a week or two back when starting to treat for parasites. Are you still working on that? Or did your ND want you to take a rest?
Try to hang in there. Unfortunately, these horrible low points creep up on us every now and then and we all need extra support and encouragement during those times.
Sending prayers and hugs your way. Posts: 2386 | From New England | Registered: Aug 2011
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glm1111
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posted
Maya,
I was just thinking about you. Did you stop treating for parasites? Is your LLND ART trained? I am so sorry you are feeling so bad.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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timaca
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posted
Maya~ To quote Winston Churchill: Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.
(2) Cutting out all foods that potentially could cause food intolerance. See the two books in the section on Food Intolerance or Food Allergies: http://tinascocina.com/resources/
This month I have felt the best in 9 years. Knock on wood and say prayers it continues.
Hugs, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lax mom
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Catgirl
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posted
Maya, have you had a methyl panel done? Maybe you have a detox issue? Also, are you still treating for parasites? Energy testing?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Maya, you are in my thoughts and prayers. I'm so sorry you are having a rough time right now. Posts: 428 | From Midwest | Registered: Dec 2012
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posted
Not all of us are the same when it comes to handling liver detox. Some of us have a hard time detoxing.
I did the liver detoxigenomic test through Genova Lab in NC and it showed which liver detox pathways are working and which aren't, genetically. For me, two major ones aren't functioning well.
Since I have a hard time detoxing, I am doing so successfully through sweating out toxins through my skin every 5 days in an FIR - far infrared sauna tent. It's slow, gradual, and successful.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Don't give up Maya! I've been under treatment for 6 months and feel worse than when I started. I'm beginning to think my LLMD must look further into detox testing for me and parasites from all the incredible information on this site. Hang in there! Lots of hugs and prayers for you and all of us!
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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Sorry you are feeling so discouraged. I know my daughter is going through a rough time emotionally right now. 18 months with some improvement. Definitely not as fast as we hoped. It's hard! Just know that others know how you feel. Keep trying!
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Hey Maya hang in there. I'm in my seventh year. Long time but making strides. Have you ever contacted Dr. M in B.C.? He will talk with anyone and has good advice at no charge to you.
P.M. me if you need his tx number.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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beaches
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posted
Maya, "giving up" is just not an option for you or anyone else here.
Please just continue posting. There's so much support on this board.
Posts: 1885 | From here | Registered: Jul 2012
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Maya, I've been in your shoes and I know how hopeless one can feel but know that there is hope and I am proof of that. It may seem like an eternity but As lpkayak said, 7 months isn't very long for many with lyme.
I was already very ill when I started treatment and the treatments made me so much worse. At one point I had to get a wheelchair to manage the trip to my LLMD because I was so dizzy and had no stamina for walking.
I ended up having many of the detox bottlenecks that one reads about here. I cannot detox borrelia toxins so the more we killed the sicker I got. My cells filled up with toxins and the more we killed the fuller my cells filled up with debri. I also have methylation issues making it harder to detox. In addition, the die-off causes horrible inflammation for me which makes me very sore and causes a load of symptoms. Your LLMD should be aware of and know how to treat these issues. If not, find someone who can help you with detox.
With the help of my LLMD we tested and found these problems and treated them. You can read about some of these issues in my posts here:
Hang in there, the alternative to no treatment is not a pleasant life at least it wasn't for me or anyone in my family.
Unfortunately it is complicated but it's worth the effort.
I am not well but sooo much better and life is worth living again. Hang in there. Stick to it and you will eventually reap the rewards. It was 3 years before I had significant improvement.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi Maya, I just want to say you're not alone. It seems like I go through spells a few times a month where I feel the same as you.
It's so confusing because there are SO many suggestions on how to get well, but since chronic lyme disease hasn't been researched and acknowledged in most areas, we feel like guinea pigs! ..at least I do at times.
My sister and I have been in treatment for about eight months and we see just a tiny bit of improvement. But, I'm also not working this year so who knows how I'd be if I was pushing myself to work. There are days where I think I haven't made a bit of progress - especially when taking tindamax!!
I can handle the pain and sickness much better than the anxiety and depression. Depression is the worst, when you don't even want to get out of bed to face another agonizing day, living this nightmare.
Have you been tested for MTHR? I haven't but my doctor has mentioned it because medications are so hard on me. Just remember people here care so much about you and you're not alone. Hugs...
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
So sorry you are feeling this way. I know it's so frustrating, but hang in there.
It could be you are herxing or having trouble detoxing. People have given you some great suggestions to follow up on.
I see you are in Canada, so you might want to check www.canlyme.com and click on the upper-left side for "Get Support". Find a support group in your area (if there is one and you are able to attend).
Please know you and all suffering from this terrible disease are in my prayers.
Posts: 8981 | From Illinois | Registered: May 2006
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sutherngrl
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posted
Sorry you are feeling so bad. Lyme Disease is so hard to get over. It took me way more than 8 months to start to feel good. I had to try different antibiotics, and take low dose therapy to finally get well. I treated for 4 and a half years and it was the last 2 and a half years when I finally started to improve.
You can get well. Its just a matter of the right meds, the dose thats right for you, a good doctor, and time. It takes most people a few years to get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Catgirl
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posted
Maya, have you tried Deplin yet?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Where are you in Canada? I'm in Montreal. You can PM me if you want.
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
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annxyzz
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Member # 20404
posted
It seems that many here assume that everyone has access to LLMds , to health insurance , and to information that will eventually result in a cure . While I applaud the efforts to encourage the weary , you might remember many of us have no insurance that is affordable . Many of us have tried a million things to get better and still struggle miserably , and many of us see that cures appear rather elusive . Read the book "Cure Unknown " or a review of it at amazon.
This disease is a monster from hell and there is not much really known about it .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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TerryK
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posted
annxyzz - unfortunately as you point out a lot of ppl don't have access to LLMD's but Maya did say that she had been treating with meds and was now seeing an LLND so it seems appropriate to take that into consideration when responding to her.
There are a number of websites that would be useful to those who need other means of healing besides LLMD's and prescription meds.
Maya12
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posted
Hi guys I just want to thank you all for your kind support and caring , I have had a slightly better day today
I am going to keep trying for now
All of your comments and caring to me have helped me to try to keep going
Thanks so much to all of you
Hugs
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
Frequent Contributor (1K+ posts)
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posted
Just wondering too does anyone ever get brain and body zaps and feel like their muscles are very heavy and slow ?
Posts: 1632 | From Canada | Registered: Feb 2012
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I have been through days and moments I thought no one could endure.
I am now much better but not well. I have the heavy slow feeling in my eyes.
I think I need to get back on the antibiotic eye drops.
Make sure you are detoxing through saunas, foot baths, epsom salt baths, etc.
Also my biggest break was when I started using a parasite med.
Hang in there, you are not alone and every one here knows how real this illness is.
Take care and know you are going to get better.
If you don't have a doc and need assistance PM me and I can give you the name and phone number
of some one that can help you look at options and help you get to a LLMD.
Posts: 620 | From Ks | Registered: Oct 2011
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dbpei
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posted
Glad you are feeling a little better, Maya. This disease can change the way we feel from one day to the next.
When my body is having a hard time detoxing, I get that heaviness in my muscles that you are describing. I also get little twitches and I have buzzing and bug crawling sensations in my head (and unfortunately, lots of noise - tinnitus) as opposed to the brain zaps you are describing.
Posts: 2386 | From New England | Registered: Aug 2011
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Maya12
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Member # 36392
posted
Hey guys just wondering did anyone actually get way worse after about 6 months of treatment
The only thing that scares me is that for the first few months of treatment I was doing ok and then just went down holland have never quite come back to a baseline
Did this happen to anyone?
Now at around 9 months I am still more symptomatic than before treatment but slowly seeing gliders of hope
Did anyone else have this happen , ie treating and at first when starting treatment feeling a bit better only to get way worse as you treated more?
If so what caused this , was it detox issues? Was it that the more you treated the worse you got because you were not detoxing well and did detoxing help?
Did you start to get better once you started working on detox?
Was the detoxing very hard at first?
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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posted
Anyone?
Posts: 1632 | From Canada | Registered: Feb 2012
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dbpei
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posted
Maya, I did not get worse, but I did not get better either. And when I started treatment, I felt worse.
I am reading the Salt C Plus Protocol E Book right now and the author says that what you are describing is very common with lyme patients. I will quote a section below:
"Without knowing exactly what is going on, it can be a source of concern and even alarm for some.
Individuals have encountered Herx reactions during effective treatments and wrongly thought they were �getting worse�, or �going backwards� due to a sudden flare of symptoms or other phenomena and stopped the treatment (which was actually working)...
The exotoxins and endotoxins are toxic to the host system and cause inflammatory response (cytokines). The result is exacerbation of symptoms and can see immune response reactions (flu-ish feelings, chills, temperatures, aches, etc.)."
Hope this helps.
Posts: 2386 | From New England | Registered: Aug 2011
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Maya12
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posted
Can this worsening go on for months at a time though?
I have been more symptomatic for about three months now and just wondering if this is normal
Do most get worse for a longer time at about 9 months into treatment?
Posts: 1632 | From Canada | Registered: Feb 2012
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dbpei
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posted
Maya, I wish I could answer this question. I don't know... If you haven't already, please join the Webinar held on Tuesday nights with a LLMD who will answer your questions.
Some things to think about if you have been feeling worse for extended periods would be mold, a coinfection that is not being treated, parasites (I know you have started treating for them), and heavy metals. Also, you may be poor at detoxing (like me) and need lots more support with this.
I am getting my house tested for mold and I am close to starting salt c plus protocol. I would like to eventually be tested with ART and then go to a biological dentist. It is a long, tiring journey to get well.
Have you gone to any support groups in your area? I bet you would really benefit by this.
Posts: 2386 | From New England | Registered: Aug 2011
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Maya12
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If I am not detoxing well, which I know I am not , can treatment just make you sicker and sicker and make your symptoms constantly worse?
Posts: 1632 | From Canada | Registered: Feb 2012
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Tammy N.
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posted
Maya - just wanted to send well wishes your way. I hope you find your way to a path that brings you back to wellness.
Regarding your last question -- yes, if you are not detoxing well, yes, you can become sicker with some treatments because your body may be unable to process all of the die-off and toxins.
It's imperative to find ways to help your body detox. I don't sweat, but that would be my first choice. If you can work up a good sweat every day, that was be terrific.
One of the biggest things that helps me is coffee enemas. I've also just restarted doing castor oil packs on my liver at night.
There are so many great tricks you can try. Check out some of the past threads here on Lymenet where people share ideas.
Sending you good thoughts.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Maya12
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posted
Hey TAmmy, i know you mentioned that treating was making you sicker and sicker the longer you treated and that your cells were filling up with more and more toxins
Did you keep going down hill the more you treated, until you dealt with the detox issues?
Just wondering though, when you found out that you had detox issues, because of all of the toxins that had built up during the killing of the bugs that you were not detoxing well, when you first started working on detoxing, did you find that at first you got worse from the detoxing?
basically were you so toxic that when you started detoxing it caused a flare in your symptoms?
i know i can not detox well at all and have just recently started to work on detoxing but am finding that the detoxing is flaring my symptoms as well.
did you also experience this for a while till more of the toxins were cleaned out?
Posts: 1632 | From Canada | Registered: Feb 2012
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nefferdun
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Do you remember the game at the fair where you bonk toy gophers on the head and as the one you hit goes down it's hole, another one comes up?
That is what lyme disease is like. You hit one infection and up comes the next one. You have to be quick to recognize it is something new and change medication. That is why you get better and worse or just don't respond.
I was where you are last year. I couldn't tolerate the drugs I had been taking and I was sure I was going to be committed to a nursing home with dementia. That is when I tested positive for protomxzoa and changed my treatment.
Before that it was discovering I had borellia, then bartonella, then babesia duncani and ehrlichia. There is a reason for the madness. Don't give up finding it.
If you have a CBS mutation and the doctor is giving you the typical one size fits all liver detox, it could be making you much sicker. Milk thistle, alpha lipoid acid and cysteine all have sulfur and if you have the CBS mutation you can't tolerate sulfur. It will cause problems.
It would be better to get tested to find out what your mutations are so you are treating intelligently.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Maya12
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posted
well my llnd just found that i have tonnes of biofilm in my blood and a lot of heavy metals
i think we will be treating the biofilms and heavy metals next and parasites once my liver is a bit better
in the meantime though i am just detoxing and this is making my sx worse , uggg
everything just so tuff and makes me worse, it just really sucks , wish i could tolerate the meds right now but i cant since i am so toxic from 9 months of killing and not getting rid of it
thanks for the help neff
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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can treating detox issues be very difficult at first and flare your symptons?
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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posted
And when I say detoxing I mean working on liver health and genetic issues with b12 and folate
Does anyone find the first few weeks of the detox and treating the genetic mutations really tough because you are finally starting to release what has been stored?
Do most go off meds while treating these issues?
Posts: 1632 | From Canada | Registered: Feb 2012
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WPinVA
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posted
Maya, I just wanted to add to the chorus of support and to answer one of your questions. I have been treating now for about a year and a half. So much less time than many on here but that's still a lot of time out of my life.
No, I did not get worse at 9 months. And I didn't get worse overall with treatment. I got better month by month, but V-E-R-Y slowly. I'm much improved but still have a ways to go.
Of course, there were times when I had dips, due to certain meds that I wasn't tolerating, sicknesses I picked up, or who knows why - just the cyclical nature of Lyme. But overall the trend has always been upward.
I also wanted to say that my doctor pulses meds, so my body has a break from my meds. Some will say this is not the right way to go, and maybe it isn't for everyone, but it has helped me a lot.
I think I have issues with detoxing (I have one of the MTHFR mutations, and I'm very sensitive to off-gassing, gas stove, etc.) So, if I were to take very strong meds all the time, I probably would not react well.
And indeed I do feel pretty crappy when I take certain drugs, like Flagyl or Rifampin, and I'm very glad I have a break from them. The breaks give me something to look forward to on the bad days, and give me hope that I can get past all of this.
In fact, the first time, I ever felt halfway human was during an "off week" from meds about a year ago. Of course I felt awful again the next week when I resumed a heavy course of abx, but that one week gave me so much hope, and it gave me something to look forward to.
So, this is a long way of saying that there are lots of different approaches to Lyme treatment and it sounds like you haven't yet found the one for you, but that doesn't mean it's not out there and that you can't get well.
One thing that I have found helpful is to keep a calendar and write down notes every day on how I'm feeling, which drugs I'm taking, etc. It's helped to identify patterns of Herx'es, trends, etc., and it has also gave me a greater sense of calm on the bad days because I understand it's part of a larger pattern so I don't need to panic that I'm going downhill.
And finally, for the biofilms, boluoke is well-regarded but unfortunately very expensive.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Tammy N.
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Hi maya - it wasn't me that said I just kept getting sicker and sicker with treatment and that my cells were filling up with more and more toxins. You may be thinking of someone else. This is very common among so many.
For me, I never received any lasting improvements with abx. And when I'm put on too many things (supps, herbs, etc.) I just don't feel well. It must be too much for my body to process.
Also, I was never treated for parasites. I've seen the most improvements with parasite treatment, coffee enemas, methylated B vitamins and folate, and LDN. This all seems to be a very good combo for me. And microsilica (binder). I take other things as well, but I think these have been particularly helpful.
I think between the coffee enemas and the microsilica it's been helpful for detoxing. Also the methylated B vits and folate to help assist with the MTHFR issue I have. I still need to do the full methylation panel, but haven't gotten to it yet.
Posts: 2238 | From East Coast | Registered: Jul 2010
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