posted
Been treating since April of 2008 Sick for about 8 yrs.
Done RX with Zithro, Ceftin. 12 weeks rocephin. 3months doxy.
No matter what I do I can't get rid of the pain in my joints and muscles. Not RA, not fibromyalgia, no one can figure it out.
Doctors don't want to give long term narcotics,but can't live my very crazy life with out something to dull the pain. Don't know who to turn to. Anyone got some good ideas because I can't take much more!!!
Posts: 21 | From newtown,CT | Registered: Oct 2002
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posted
I'm certainly no expert, but if you have been sick for 8 years it sounds like maybe you haven't treated long enough. How were your symptoms after you were on rocephin? Were you still symptomatic?
Posts: 374 | From United States | Registered: Nov 2008
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posted
I am sorry you are feeling this way! I have many times that I feel this way too. But we must go on and fight!! It takes time. I am not a patient person. So this is teaching me to learn to be patient.
Do you see an LLMD? I have been on Doxy since October 08 and now also take Biaxin for the last month.
Have to say that I don't feel much better. Except my deblitating fatigue has lifted some. So then I can do more, but then my arthritis creaps in and reminds me that it's still here. Can't win!
It's very frusterating to want your life back and have no idea how or when or if that will happen. My kids have Lyme too so I have to keep going no matter what. It does suck!
I have found that when I am raising awareness about Lyme I feel better, emotionally. Our family recently did a tv news interview and 2 newspaper interviews!
Just wanted to lend my support your way! You are not alone my friend!! (HUGS) Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I can't take doxy anymore or most RX's anymore. LOst my gallbladder to the rochephin and it caused some serious stomach issues.I treated for close to 14 months and still feel like S--t. Any idesas would be great
Posts: 21 | From newtown,CT | Registered: Oct 2002
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites!! When I started treating with antiparasitics (mainly salt/c) I had little parasites come out of my wrist joints. First they formed scabs
Parasites and Worms play a MAJOR part in Lyme disease. Check out
-------------------- 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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am so sorry youi are still struggling. This is only my opinion, but no improvement after 14 months of that heavy-duty regimen would make me thin it's not Lyme causing the issues. I'm sure you've pursued everything else though.
I'm SURE you have a LLMD because there's no way in hell any regular doc would Rx that stuff for that time length w/o losing their license.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
There could be other problems complicating the treatment such as heavy metal poisoning. I made no progress whatsoever until I discovered I had mercury poisoning due to dental fillings. Once I removed the fillings and started chelation i've gradually made improvement. Still other problems can exist that I'm not quite as educated about.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
Were you tested/treated for coinfections? Also, maybe you need a cyst buster like Flagyl. My Lyme did not improve at all until that step.
Don't give up! Keep trying!
Read posts and get ideas. I started taking magnesium and really good probiotics because of this site and that made a big difference too.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been sick for five years and in treatment almost all of it. I'm sicker than ever. But I can't see giving up as an option.
I think IV antibiotics are going to really help me. I only got ten weeks of them and DRAMATICALLY improved, with most of my symptoms resolving. I'm trying now to get back on them.
I don't know what other choice we have than to keep seeking answers. What's the alternative? If you are thinking of REALLY giving up, please seek some support....join us in LymeChat at night for support.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thanks for all your support. And yes seekhelp it was all done thru my PCP. I can't afford a great doc. I know giving up is not an option but somedays like today lots of pain, no painmeds and can't get them till Sun, I just want to give up.
I will continue to search for answers. Hope I find one. Will check out some of the stuff you all said. Never tested co-infections But did test a very high positive for lyme in 2008
Posts: 21 | From newtown,CT | Registered: Oct 2002
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, I respect your PCP for willing to help. That's very nice and honorable! I wish more docs had compassion. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I think he was just very determined to make me better. Now he's a little frustrated as am I. Slaking in his follow ups,or is just afraid of getting in trouble.
Posts: 21 | From newtown,CT | Registered: Oct 2002
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: No matter what I do I can't get rid of the pain in my joints and muscles. Not RA, not fibromyalgia, no one can figure it out.
Are you taking supplements to reduce inflammation?
Fish oil Magnesium Systemic enzymes Zyflammend and others
These have helped me...except for the Zyflammend, which I stopped due to heartburn.
I found that FibroBoost, which has an extract of brown algae, helps my joints.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Study the Burrascano lyme treatment guidelines. Here are some principles from the guidelines:
You must use combinations of antibiotics, and doses must be high. You need bactericidal doses for them to do any good.
For example, to kill lyme, use flagyl 250 mg 3 times per day (to kill cyst form) plus zithromax once per day (to kill regular form). You must attack the lyme in both forms at the same time. You can substitute amoxicillin for the zith at 1,500 mg 3 times per day. Stay on this at least 2 months.
If you never take anything to kill the cyst form, you will never get rid of lyme disease. The lyme hides from the doxy, etc. by forming a cyst around itself. Then, when it senses that the antibiotic is no longer in the blood, it comes out of the cyst and continues multiplying.
Only certain meds kill the cyst form. Read about it in Burrascano.
You must be tested for coinfections by Igenex--babesiosis and bartonella at a minimum. Check post at top of "Medical Questions" for the list of coinfection symptoms. Your PCP can order the Igenex test kit for free, draw your blood, and you send the payment for the tests to Igenex along with your blood. Igenex has a website and phone number to explain how to do this.
Even if you test negative for a coinfection, if you have a number of the symptoms, you need treated for that coinfection. The tests are not 100% accurate, so you must go by symptoms if tests come back negative.
Per Burrascano, it is virtually universal that someone sick with lyme for 8 years has coinfections. You will not get well until you treat every one that you have. Period. Each infection helps the others stay in your body. They are all compromising your immune system.
For babesiosis, use mepron, zith, and pulse the herb artimesinin. Use the Burrascano doses.
For bartonella, take levaquin 500 mg once per day for at least 30 days. Then, you can switch to Bactrim DS 2 times per day. That will hit babesiosis and bartonella.
The suggested meds above are all very simplistic. It isn't that simple at all.
Sorry to say, but it is virtually impossible for you to get well trying to treat this on your own. You are the doctor's first lyme patient. No experience, no expertise. You can't just throw meds at these diseases. You have to know what you are doing. Lyme is extremely complex--unbelievably so.
A good lyme doc will closely question you about symptoms. Some symptoms are closely associated with a certain coinfection. For example, lots of intestinal problems means bart. So does sore soles of the feet. Bart can also cause strange red lines or other marks on the body.
Air hunger (breathlessness) means babesiosis. Also night sweats.
Read them over and over. Study them. Learn as much as you can from this document. It teaches you what good lyme treatment looks like.
Take all the supplements Burrascano says are essential. Lyme depletes the body of these things. No alcohol, smoking, no sugar, etc. as per Burrascano. You must boost your immune system if you are ever to get rid of these diseases.
Many people with lyme have to ask their family or church for financial help in order to afford a lyme doctor. The most logical thing for you to do would be to come up with a way to see a lyme doctor. You've tried treating without one and it has not worked.
They take credit cards for payment.
I suggest you only go to a doc who follows the Burrascano protocol. Call the doc's office and ask if he follows Burrascano before making the appt.
I and my friends have all gotten rid of their diseases (lyme, bab, bart) by going to Burrascano type docs. You are often finished in one year.
The doc is the key to recovering from this complex disease, my friend. The doc is the key.
I finished my lyme treatment 4 years ago and I am symptom-free, enjoying my life--the same life I had before lyme. And, I went undiagnosed at least 10 years.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Been at this 3 years in excruciating pain. Hardly any improvement.
But I keep hearing if you stay the course there will be a payoff.
I can relate to what you are feeling, although a little over a year of treatment after 8 years isn't nearly long enough.
Many take 8 years+ of treatment w/ abx &/or open ended therapy.
Get a better doctor, one who will treat long term.
There are many abx it sounds like you haven't done...there is a combo that will show improvement, just gotta keep tryin'.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would say it is your hormones. They can in some
cases turn ligaments to mush and cause extreme
pain. I would find a good endocrinologist who can
figure this out for you but I have to tell you it
took 4 before I found one that actually knows what he is doing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I also hit a rough patch at the end of the first and second year of treatment, and I was not all well yet.
I got my best results after that. Late stage lyme can take a long time -- over 2 years -- to treat.
Have you treated babesia? That can make a huge difference.
Zyflamend is good for joint pain, along with other Dr. B recommended supplements. Best wishes, hope you can hang in there longer.
Posts: 2557 | From home | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Been treated myself for 7years. STill treating all natural.
Don't let ANYONE, I mean ANYONE suggest there should be a time limit on treating, or a length of time after which treating is insane.
Some have this for life, because of our chemical make-up, and other complications, our immune systems, and hords of other variables a person could write a dissertation on.
When I feel like giving up, I look at my three beautiful daughters with lyme disease. They are young now and doing well while on their medication.
What if they want to give up? What if I am dead by then? What will lift them up?
The only answer is the memory of my fight, how hard I fought, how long I fought, and that I could still feel joy along the way.
This keeps me going.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
And yes, sometimes are lives are made meaningful by not by our sucesses, but by how we managed our dissappointments. This is the real measure of a life well lived.
It is hard to swallow that when you feel like every opportunity to fulfill your talents was taken away, but we still have to medidate on it anyway.
I always tell the ladies in my book club this. WE are defined by how we get through our struggles, not by our luck and opportunites.
Today I am not crying all day, so I can spit this out today.
Mary Posts: 1034 | From North Carolina | Registered: Aug 2003
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
That is very beautiful, LymeWreck. Thank you. And I'm glad you aren't crying today.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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