posted
My daughter had a bullseye rash 6 years ago that went untreated. She felt sick a few months later, started getting headaches, and psych problems.
She said she felt sick but of course, nothing was found, except "anxiety". We treated her migraines and anxiety with Elavil and she was ok for a few years.
Then, the Elavil stopped working and her headache has been constant since Oct. 2007. She also feels sick and now has fatigue. She has muscle twitches.
She has been on abx since February 2008. Her mood disorder symptoms have gone away. Her muscle twitching has decreased. Nothing else has changed.
For the most part, she doesn't have clear herxes. There have been times I thought the abx made her worse, and she might have gotten a little better when we stopped it, but it's hard to really tell because she feels so bad all of the time.
Other meds have definitely made her worse, but stopping them didn't make her better. One time, she got even worse when we stopped it.
A few times, she has started abx or combinations and clearly seemed better. She would say she didn't feel any different, but she was up and around more. That hasn't lasted, though.
For me, I have a few symptoms of muscle twitching, air hunger, knee pain. Certain abx make these all but disappear. But, I rarely herx and I haven't seemed to get a lot better. I've been on abx for almost 2 years.
My CD57 is around 37 and my Ca4 is 12,000+. I tested slightly positive for babs. My daughter has tested slightly positive for babs and bart in the past, but is now negative. We have both been IGeneX positive for Lyme in the past but are now negative. My daughter had a CDC positive from Clongen in the past also.
So given our relative lack of progress, is it possible we are chasing Lyme when we need to be looking at something else?
Posts: 984 | From US | Registered: Dec 2007
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posted
Sounds like it could be co-infections to me...have either of you been treated for those?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Heavy metals? Intestinal yeast? Parasites? These seem to go along with chronic Lyme, and if so have to be addressed. Good luck.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
I've been treated for bart. I'm hoping babs is the missing link for me.
My daughter has been treated for babs. It was when we did bart treatment that she got worse and stayed worse on Rifampin, then got even worse than that when we stopped it. Her Galaxy Lab test was negative for bart though.
My husband is starting to wonder how long we are going to go after Lyme and co's without results before we give up on Lyme as the answer. I can think of many reasons myself why we maybe haven't succeeded with it so far, but am I just fooling myself? It seems like we should be seeing more results, especially for her, than we are.
For me, I feel better on abx, so I feel like continuing, even if it is something else. For her, she has been suffering so long, what if it isn't even Lyme, etc.?
Posts: 984 | From US | Registered: Dec 2007
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posted
Her LLMD tested her for heavy metals and didn't see a huge problem. She is doing some supplements that will help a little with that.
She had yeast, but treated for that. No obvious signs of it now.
Her LLMD did a stool test for parasites and found nothing. Maybe we should add something anyway.
Posts: 984 | From US | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
I know I definitely have been exposed to Lyme, bartonella h., babesia duncani, mycoplasma...etc etc.
I think at least some of those infections are still active (testing indicates this too).
But I also recently tested positive for moderate sleep apnea, and they said it could account for my fatigue. Haven't started the treatment yet. But it goes to show sometimes more than one thing is going on.
But on the other hand, it could just be one of the infections. Just gotta address everything, and go with your gut, I guess.
Posts: 89 | From U.S. | Registered: Apr 2010
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posted
Dear jkmom, I'm so sorry you & your daughter are still having symptoms.
From all you wrote, it sounds like you have LD & co's that still need to be attacked and cleared. Two successful LLMDs in my area believe it's most important to kick Babesiosis first.
If you can, try to help your hubby understand that many people with chronic LD also have Babesiosis, esp those with neurological sx like your dear daughter's anxiety. Babesiosis makes it difficult to recover completely from Lyme disease, and LD makes it difficult to recover from Babes.
Meanwhile, Bartonellosis is another tough co-infection. As i understand it, Bart would be attacked after Babes is cleared.
If hubby can't sympathize, you'll need to ignore him! Finding effective treatment to get you & your daughter into long-term remission will continue to be of utmost importance in your household. Don't stop until all symptoms have been cleared for 3 months or more!
Other posters have mentioned co-infections plus other conditions common to Lyme sufferers. It's a very complex web of symbiotic parasitic invasion.
I understand you're in a very tough place since there are no LLMDs in TX. Please try to travel for the best help possible.
Additional ideas to pursue while getting ILADS-based Babes tx from a LLMD:
- Cleansing enemas, then retention enemas? Can do wonders. - Liver support, liver support, liver support. - Ongoing GF Candida control diet, all the time.
I'm not a healthcare professional, just sharing thoughts...
quote:Originally posted by sunnydays: I also recently tested positive for moderate sleep apnea, and they said it could account for my fatigue. Haven't started the treatment yet. But it goes to show sometimes more than one thing is going on.
But on the other hand, it could just be one of the infections. Just gotta address everything, and go with your gut, I guess.
I've read in several places (sorry no reference now) that sleep apnea is a symptom of Lyme disease. Caused by Borreliosis and/or Bartonellosis, if i recall.
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I am really going to look into the viral issues. I know she is positive for HHV6, but her LLMD doesn't think that is worth pursuing. I will have to look into it more to see if it is worth another doc's involvement or more persuasion on my part.
She is also positive for bornavirus so maybe we need to get back on that treatment.
After watching her last night, I am thinking some of her fatigue is a mental fatigue, rather than a physical one. Meaning, she finds the thought of doing certain things so overwhelming not that it is actually physically overwhelming.
She has a good LLMD in the Northeast. That is part of what is making this so frustrating.
Posts: 984 | From US | Registered: Dec 2007
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posted
Sorry about this and I feel for you--I can't make any progress either. I don't know what to say but keep trying. Posts: 702 | From North Eastern USA | Registered: Dec 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I was dx with Lyme, bart, babas and erlichia. After 4 yrs of abx I decided to take antiparasitic herbs after coming across
I took the for 6 mos and then started the salt/c and all hell broke loose. EVERYTHING pictured on lymephotos came pouring out of me.
Willy Burgdorfer found Adult Filarial Worms in the ticks he dissected. Dr. K. treats ALL of his patients first for parasites and worms. There is a lot of info about parasites on lymenet if you type it in to the search bar above.
PLEASE don't ignore this,
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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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
jkmom,
Sorry to hear you and your daughter are not making much progress. I know how frustrating that is. At least her mood problems are better - I think that is a good sign.
It does very much sound to me like you both have Lyme and coinfections. Like others have said, you and your daughter probably have parasites, viruses, heavy metals and candida, even if that is not evident. A stool test for parasites is pretty much worthless.
I know I have mentioned this before, but it might be worth a try to get an electrodermal testing scan done. You may not be convinced it works, but what do you have to lose besides $100? The beauty of this test is that it can see the infections and viruses and parasites that the blood test does not show. And it can show you which meds/herbs would be good for your daughter and which ones would work on the the specific infections. This would be further confirmation of the Lyme, etc. I was skeptical at first, but the machine confirmed my hunches over and over again.
And if you are considering going after the viruses, then you can use the homeopathic remedy for the specific virus that your EDS practitioner gives you. Our entire family is on a remedy for EBV and for CMV.
My husband has plateaued on abx after almost 3 years, and he is now trying our electrodermal practioner's herbal protocol. It is working with the kids and I am very hopeful it will work for him. He is herxing a lot on just a few drops of the nutramedix herbs.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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quote:Originally posted by Richard1062: Heavy metals? Intestinal yeast? Parasites? These seem to go along with chronic Lyme, and if so have to be addressed. Good luck.
How do you know if you have intestinal yeast. Are there any tests or do we need to look for symptoms. Barb
Posts: 96 | From Germantown | Registered: Mar 2010
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