posted
Hi-I am new to this forum but not to lyme disease. I have been sick 4 years and in treatment for two. I have been on amox-probenecid-ketek-ceftin-malarone-plaq-levaquin-rifampin-rocephin-bicillin 3X weekly and now on doxy/zithro. My two worse symptoms have been constant fatigue and left calf pain/cramping/shooting pain. I have had many other symptoms but these two remain my worse and still constant problems. I have had these two since the beginning (oct 2004) and the only thing that worked for me was rocephin. I had to stop due to gallbladder problems and had it removed in June. I don't want to make this too long but does anyone have any idea on why I can't seem to get rid of these two symptoms. I can live with the calf pain but the chronic fatigue makes it very difficult to function most days and I am beginning to wonder if abx can solve this. I must mention that I also have adrenal insufficiency and hypothyroid and am on medication for that also. How is is possible to have constant fatigue for four years after being on so many abx. I would appreciate any ideas because I just am really unsure what to do at this point. I see a LLMD in NY. Thanks for any imput.. kim812
Posts: 343 | From North Carolina | Registered: Oct 2008
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Kim,
So sorry you are sick, but very glad you have a doctor and are in treatment.
I had terrible cramps in my calves that would wake me up in the middle of the night and it was due to my low thyroid problems. I had to keep adjusting my dosages until that symptom went away. Maybe trying that might help? Magnesium might help too or calcium?
As far as the fatigue..are you getting the toxins out, detoxing well? I had very bad fatigue the first 2-3 years in treatment.
I always had to adjust my dosages of everything. I am an odd ball and had to do everything low dose, otherwise I got too sick. That is just me tho, some people do well on high dose.
I wish I could help more and I hope you find out something that will help you. Feel better soon.
Breaking up your post to make it easier to read.
"Hi-I am new to this forum but not to lyme disease. I have been sick 4 years and in treatment for two. I have been on amox-probenecid-ketek-ceftin-malarone-plaq-levaquin-rifampin-rocephin-bicillin 3X weekly and now on doxy/zithro.
My two worse symptoms have been constant fatigue and left calf pain/cramping/shooting pain.
I have had many other symptoms but these two remain my worse and still constant problems. I have had these two since the beginning (oct 2004) and the only thing that worked for me was rocephin.
I had to stop due to gallbladder problems and had it removed in June. I don't want to make this too long but does anyone have any idea on why I can't seem to get rid of these two symptoms.
I can live with the calf pain but the chronic fatigue makes it very difficult to function most days and I am beginning to wonder if abx can solve this. I must mention that I also have adrenal insufficiency and hypothyroid and am on medication for that also.
How is is possible to have constant fatigue for four years after being on so many abx. I would appreciate any ideas because I just am really unsure what to do at this point. I see a LLMD in NY. Thanks for any imput..
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Kim,
Sorry to hear you are dealing with so much at the moment.
I dont know if you have heard of Dr. Burrascano, (world renown lyme doctor) perhaps you have. Here are in guidelines in case you would like to read it--its SOO informative.
Good luck. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
For the calf pain, perhaps calcium/magnesium would help?
I use A to B Calm, which is acidic for absorption and a liquid. Also, CALM by Peter Gillham, which is magnesium citrate.
Recently, I found my body wasn't absorbing the magnesium I was taking, as I was STILL getting cramps in spite of very large doses of Magnesium. My LLMD recommended TAURINE--1 gm capsules 3-5 times a day. WOW! Within 24 hours, I could reduce my magnesium intake by half or more, and no more cramping up in the legs and feet overnight!
Hope this helps.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Thanks for your replys. I am on tons of supplements for the fatigue but nothing seems to help. I won't name them all because they are the ones that are mentioned in all the literature plus others.
I feel that I am at a point where the abx are not going to help me anymore. I am not sure what is fatiguing my body so badly but I have to look for other reasons than Lyme and Bart.
I am having a real tough time on doxy/zithro combo. It is causing added fatigue/exhaustion and chills at night. I guess I am looking for a magic answer..
I really thought seeing a well known LLMD in NY would be the ticket to wellness but so far that is not happening and it is so discouraging.
I have been to a few Lyme forums and it doesn't seem as if many people struggle daily with the fatigue. I have a few good hours in the morning and then it is downhill from there. It is like the life is being sucked out of my body even if I have done nothing.
I am very happy I found this forum and have much reading to do. Thanks again for everyones response.
Kim
Posts: 343 | From North Carolina | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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gemofnj - THANKS so much for the Dr. B. update on supplements. So very glad to see that.
---------
There may be some helpful information in these books for you.
Singleton discusses adrenal support at length, even to the point of using low-dose Cortef and how to do that safely if it is necessary. For some, that makes a world of difference.
This book, by an ILADS member LLMD, holds great information about pharmaceutical and complementary treatments:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Kim,
as we learn more from several who have gone to Germany for treatment with the BIONIC 880, if you possibly have the funds to consider this, it might be right up your alley.
You can do a search here for BIONIC 880, or BIONIC and several good threads will come up.
Three threads are below, but I may have missed some.
Increasingly, this treatment seems to be one that warrants serious consideration.
posted
Thanks all for the ideas..I would not be able to travel right now but maybe in the future. I have been in treatment for 2 years but only 1 year with my LLMD. I think I am going to try and stick it out for a while longer with the abx. I am not sure how long but after reading many postings I think I should keep at it.
I am on cortef for my adrenals and levoxyl for my thyroid. Plus many other supplements for fatigue and adrenal support as well as detoxing.
I guess it is hard for me to believe that after 4 years I still have the same two original symptoms with no relief..
Posts: 343 | From North Carolina | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Kim,
Have you been assessed for porphyria - it's a dysfunction of the liver that can cause many neurological issues - and pain - and fatigue.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
I have an appt next Tuesday so I will ask about Porphyia testing. I am not sure he will know anything about that but will certainly find out.
When I went to see my LLMD in NY they took 12 tubes of blood and did tons of tests. I have a list of about 1/3 of them and the only one that came up with something was mycoplamsa pneumonia and I had high levels of 4 heavy metals.
I am very glad I found this site actually not on my own. Someone from another forum posted about this one and I have found tons of great information here.
Today I have been having a new symptom I have not had in the four years I have been sick. Tingling in my hands and fingers. Just another thing to get upset about..
Posts: 343 | From North Carolina | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Porphyria testing must be done in a very thorough and precise manner. Please check the thread above and the American Porphyria site for details. Every step of the way needs to be done exactly to specifications.
Even then, testing is not always effective unless someone is having an exasperation.
--
Oh, the mycoplamsa pneumonia and I had high levels of 4 heavy metals could explain A LOT.
Are you getting treatment for the mycoplasma?
The Institute for Molecular Medicine A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
And, as for the heavy metal detox, that can take a while, too.
That would make porphyrins high in almost anyone, too. Heavy metals are very hard on the body.
---
the tingling is very common with lyme. If you have wrist braces (as for carpel tunnel) you might try sleeping/resting with those - or wearing when typing or other strenuous stuff for your hands.
Fish oil, Magnesium, B-complex and Methyl B-12 might help that. See link below.
posted
Kim, you might be low in IRON. Have your dr. check your serum ferrasulfate. Low iron can cause muscle pain and fatigue. I met a hematologist inadvertantly from being in the hospital with 3 dvts in the arm with picc line. They found I have a clotting disorder and low low iron. Mine was 6.8 and for my age (36) the hematologist wants it at 80. Had first iron infusion yesterday - 4 hr iv. Did not tolerate the iron pills. Don't take iron without Dr supervision, but look into it. Good luck. Jenny
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
You alluded to it already, but azithromycin has fatigue as one of it's possible side effects. It was really hard on me just from this perspective even though the rest of my symptoms were pretty much gone by then.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Thank you everyone for all the wonderful advice!
I have alot to talk with my doctor about on Tuesday.
If I could even reduce the fatigue by 30 percent It would make a huge difference.
Posts: 343 | From North Carolina | Registered: Oct 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
While I was on orals I had horrid fatique. I think it was detoxing that did it for me.
Now I'm still struggling with fatique but mine is from an HGH deficeincy.
I take injections for that.
So when you go to your doc have him check that too unless he already has.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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