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Lyme Disease Message Board


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Hi,
I was put on Dyclocyclin for Lyme disease about 6 months ago. My knees and even hip joints just seem to keep getting more sore. It is painful to walk and is often painful getting to sleep. It seems to be related to when I got Lyme disease. They did not recheck me after the first round of antibiotics, because the test will always be true for Lyme. They said that if the joint pain got worse, they would repeat the Dyclocyclin. Are there other tests or treatments that might help the joint pain ? I try to go to the gym everyday, but now I am only doing strength training, because any aerobic exercise makes my knees even worse. I would love to hear if anyone has had success treating joint pain from Lyme.

Thanks,
Joe
[COLOR="Teal"]Hi Joe, as Tess says, Infectious Disease doctors are not the ones to go to for lyme.

Borrelia, (Lyme) is in the syphilis family. It is hard to get it under control once it has gone chronic. Which it can easily.

Many of us have had to learn the lesson of, I.D. doctors do not know how to treat this disease. I went to one of the top notch places that is for infectious disease, here in Ca. They poohed me, and told me to go on my way. I then tried another infectious disease doctor, and he did the same.
And I went to see these 2 I.D. docs when I was under 100 pounds, hardly able to stand and mentally out there.

There is a documentary "Under Our Skin" that has been out a few years. It might help you in seeing that this disease is a very political disease. And there are only a handful of doctors that will put their licenses on the line to help us. From where you are sitting you should be able to find it, I think you can watch it on Netflix or order it. It is a short version of what this nightmare is about.

Joe when it comes to these diseases, no test is accurate. There are many strains of them all, so the labs do not test for all of them. And because we have Lyme or any of the co's does not mean we will always show a positive. Once we have lyme chronically it can hide out of the blood stream, creates cyst around itself. The bacteria can morph. So many start testing negative after long term treatment. Only for this bacteria to keep doing damage.

There are over 300,000 people a year getting infected. It is a endemic around the world. Not only ticks carry it, but any biting insect that goes host to host, mosquitos, fleas, bed bugs, ect, They are now admitting that it can be transferred sexually, some believe it is in the food supply. Mother to baby and some say even transferring it through saliva.

I do hope you can find a LLMD. They are specialist in these diseases.

Wishing you a quick recovery!

Jodie

Tess, thank you for suggesting the Celadrin, I am going to try it. My knees and legs get so M.S. feeling.


[/COLOR]
[QUOTE=mf1040;5224023]Hi,
I was put on Dyclocyclin for Lyme disease about 6 months ago. My knees and even hip joints just seem to keep getting more sore. It is painful to walk and is often painful getting to sleep. It seems to be related to when I got Lyme disease. They did not recheck me after the first round of antibiotics, because the test will always be true for Lyme. They said that if the joint pain got worse, they would repeat the Dyclocyclin. Are there other tests or treatments that might help the joint pain ? I try to go to the gym everyday, but now I am only doing strength training, because any aerobic exercise makes my knees even worse. I would love to hear if anyone has had success treating joint pain from Lyme.

Thanks,
Joe[/QUOTE]



I too have lyme and started treatment but with an ID physician. I did a month of Doxy and two months of IV Rocephen and will do another month of Doxy but i know thats not enough. Just trying to get some treatment while i wait for my appt with a LLMD. Only a LLMD can truly treat this hideous disease. ID drs think they know but they dont have a clue. Pls seek a LLMD.
[QUOTE=jojo;5224127][COLOR="Teal"]Hi Joe, sounds like there is that huge possibility that you weren't treated long enough or with the proper treatment.

Doesn't sound like your seeing a LLMD? Lyme Literate Medical Doctor?? (lyme specialist?)

That is whom you need to see to get the proper treatment for Lyme. Did this doctor you are seeing test you for co-infections? Babesia, Bartonella, Ericlioisis and others??

I went too many years with undiagnosed and now still after eons years of treatment, I still have issues. BUT better than I was.

From where you are sitting you can find a Lyme Support group by city, county, state. contact the contact person and see whom they can recommend that is closest to you. We can not provide LLMD names on this board.

Hope you find what works for you soon!!

Jodie[/COLOR][/QUOTE]

You need to see a LLMD. I too am being treated by an infectious disease physician who knows very little about Lyme disease. He has put me on IV Rocpehen for two months 2gms a day and i am just about done with treatment and still my joints hurt i have leg weakness...i do have a couple appts with LLMD coming up to make a decision which one i feel can help me more. You can go to the ILADS website and you can ask for physicians lyme literate in your area. Good luck. I know how hideous this disease can be and how mentally taxing it is as well. Keep us posted.





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