I had Lyme in June 2010 and was treated again in Sept 2010. I have the symptoms back again. For the first two episodes I saw the infectious disease doctor that saw me in-patient in June. It is time to find a new doctor.
Any suggestions on how to find a good doctor in the Pottstown, PA or the Wilmington, DE areas that specialize in Lyme?
Be careful with that. There is one I know of in that area ( can’t remember the name) that is a total rip-off. I lost almost an entire year to it with pain, cardiac problems and neuro problems. I went to all kinds of specialists to no avail. My regular Doc said I’ll never be completely clear of it. I was on rocephin for 30 days and doxy for about 8 months. Finally it left. I felt like I was 20 yrs younger. Had one episode where I took 2 more months of doxy. I’ve been OK for a year now. One thing I was told was to stick to a very low carb diet. Why it works, I don’t know, but it seems as though it does.
Try to talk to your Doc about IV antibiotics, if you haven’t done them yet. If you have, you might want to see if he/she will put you on long term Doxy for now. And get rid of sugar, bread and pasta.
The Lyme Doc in your area gives IM antibiotics, and doesn’t take insurance. If you come across him, run. I’ve only heard bad things!
A friend’s 30 yr old daughter just died from Lyme. She went many years undiagnosed and finally moved from Alabama to NY where she found a great doctor and began treatment. Sadly she had gone so many years with no medication that her system never caught up. I would say be diligent and research any MD recommended to you. It is such an insidious disease and I pray you stay on top of your symptoms. I know many people get on a good regime and live long healthy lives!
I still don’t understand why any physician would suggest doxy if you have neuro problems…it doesn’t cross the blood/brain barrier besides the obvious the doxycycline is cheap…
From my notes from the prof the works with Lymes for the CDC, he said ceftriaxone is their suggestion for late stage Lymes, but is costly and is IV. Cefuroxime axetil can be given orally and can cross blood/brain barrier for early lymes.
Good luck with finding a physician. Many don’t understand/aren’t willing to learn how to adequately treat or handle Lymes.
[QUOTE=starrunner;5598288]
I still don’t understand why any physician would suggest doxy if you have neuro problems…it doesn’t cross the blood/brain barrier besides the obvious the doxycycline is cheap…
From my notes from the prof the works with Lymes for the CDC, he said ceftriaxone is their suggestion for late stage Lymes, but is costly and is IV. Cefuroxime axetil can be given orally and can cross blood/brain barrier for early lymes.
Good luck with finding a physician. Many don’t understand/aren’t willing to learn how to adequately treat or handle Lymes.[/QUOTE]
I was on rocephin IV for actually it 26 days. Then developed a severe encephalopathy with a 105 temp. Was sent to university of MD. They thought the antibiotic was partially to blame. Allergy to PCN and now can not take further cephalosporins. That’s why the long term doxy.
If the OP has not done IV rocephine yet, that is the treatment of choice.
Did a 7 day course of doxy in June and a 30 day course in Aug/Sept. This is why I felt that it was time for a new doctor.
[QUOTE=SonnysMom;5598447]
Did a 7 day course of doxy in June and a 30 day course in Aug/Sept. This is why I felt that it was time for a new doctor.[/QUOTE]
I agree with that! Just be careful which Doc you choose. There are ones that prey on desperate people. A good GP can prescribe IV rocephine and set it up with home health. Insurance does pay for it. Do not go to a doctor that does not take insurance. Good luck.
I am not desperate yet. I also work in the health insurance industry so have good resources for what is reasonable medical protocol.
If worse comes to worse I can call in a favor from one of my medical review vendors for a reality check.
My relative’s insurance did not cover home based IV so she did the treatments as outpatient which meant she needed a doctor with admitting priviledges. (One Lyme doctor I am aware of does not have admitting privledges which is scary too!)
The internist knew enough from her symptoms to know she needed 30 days IV rocephin -she ended up having a severe allergic reaction about 1/2 way through (I was glad we were doing it outpatient)-and I was thankful she was able to get that much done as it turned her around–she went on doxy for several months as a follow-up and has not had any apparent relapse now going on 4 years. (keeping fingers crossed…)
Good luck.
From experience, a lot of times what looks like an allergic reaction is actually die-off. So, unless you’ve been tested by an allergist, don’t assume you actually have an allergy.
We were initially treated by Dr. Jemsek in North Carolina, then by two doctors in Maryland, one a money grubber, the other not. The great one is no longer taking patients.
My daughter was on IV, I never was. Rocephin improved her a bit, she ended up with the big guns IV, then on orals.
I was always on orals.
There’s a really great book, called The Lyme Disease Solution by Dr. Singleton. It’s well worth reading. There is a good bit of info on his website as well. http://www.lymedoctor.com/
Good luck. He may be able to recommend a doctor in your area. Most don’t take insurance, unfortunately.
Be aware that a lot of “Lyme Doctors” are continuing to have their licenses pulled by their governing boards.
There are good ones and then there are ones that have realizes it’s a good one for the money and are willing to say whatever to keep a patient in their office.
The idea of a relapse is hotly debated. IMO, the Borrelia never left, but can burrow into tendons, synovial fluid, etc where the access to antibiotics is limited to none. It grows very slowly, so eventually if your immune system doesn’t do its job, there is a “relapse”.
I just wish more physicians were adequate (and comfortable) in the Lymes diagnosis and willing to do a thorough treatment in the beginning so there aren’t long lasting damage/consequences.
Best of luck.
By the way, it’s Lyme, not Lymes. Just a “thing” that bugs me.
My apologies. My “s” tend to escape from me. Tricky little letters.
I’d just prefer to call it Lyme borreliosis and be done with it. 
I suffered from Lyme undiagnosed for 3.5 years, with neurological involvement by that point :(. It took me six months to find someone to treat me. I had to be treated for babeosis first in order to be able to effectively treat the Lyme. Mepron and zithermyecin for months for babeosis and then biaxin and flagyl ( pulsed dosage of flagyl). Herx reactions were unbelievable, I had no idea what was happening at the time, just that I was so much worse after 7 days of rx each round. I have my life back now, but I remember how frustrating it was trying to find someone willing to treat “chronic” Lyme. Pm me if I can help ( sorry for spelling and grammar, posting from my phone)
I was diagnosed with Lyme last year after I had had enough of not knowing what was wrong. I did a internet search of my issues and came up with the top 3. Lyme,Lupus, and R.A… Brief history…mostly endurance rider doing tons of mile a week and ran every other day. Went to a competition a day and a half later found a tick embedded in the small of my back. Dh digs it out we clean it. It gets real red but i figure since he had to dig it out it wasn’t unreasonable it was red and kinda swollen and the flu i got right I figured was just from being out and camping in a cold rainy weekend. Six month later I can get the engery to do ANYTHING…stop riding stop running…not cause I dont want to cause of pain and tireness.
So my GP says well no way its Lyme. Well two test later confirms it…she is shocked. Sends me to a Rhym dr. Do the doxy and was told I also have fiberyliga. So tried all kinds of meds nothing worked. Now I am only on Flixril and ambiem. But I still can not get any engery and I am so painful in the joints and muscles that I have all but stopped riding because the pain for days after is bad. Its a vicisous cycle and no good answers.
Ok sorry that kinda turned into a rant…I hate Lyme so I am reading with great interest.
Just cuz I am wondering…
What are your ( I am talking to everyone) symptoms? How long have you had it?
This thread makes me paranoid! Do all ticks carry lyme? I found a tick on me last summer and removed it and the head. The area where it had been was red, swollen and itchy for about a week in a half and eventually went away. I don’t feel bad though. Is there a test for lyme disease?
HorseLuvr, no all ticks do not carry Lyme. And all parts of the country do not have a huge problem.
As for symptoms, let’s see what I can remember.
First, I was just tired. Then my heels started to hurt. I started to have horrible headaches. I was more and more tired. My whole body started to hurt and I couldn’t sleep. I started mixing up words (using completely the wrong word) and would lose track of what I was saying halfway through a sentence.
I ended up so tired that I would go to work, come home, eat dinner and go to sleep, slept through the whole weekend.
Facial twitches and joint pain in fingers too. Horrible hip pain and shooting pain down one leg.
That’s most of mine. I was tested several times with the ELISA test, which is a very ineffective test, and was told no Lyme. Finally diagnosed by my daughter’s doctor after he figured out what had been going on with her for years.
Almost forgot the biggie. Lyme uvietis. For a while, I thought I was going to lose the sight in one eye.
By the way, I had Babesiosis, Bartonella and Lyme. The trifecta. Yippee for me. I went through 5 years of treatments and now am about 90% better.
I’m very careful about getting stressed, took antibiotics when I had knee surgery and do not get vaccinations, which triggers a relapse for me.
Hi
Someone asked about symtoms, for me, It was started as being tired and then I started having pain in my joints and large muscles. Well the fatigue had gotten so bad that a 30 min easy ride would have me on the couch for 2 hours and no engery and remember I was used to riding 4 hours at a time. And now 2yrs later I dont ride or run at very much I am lucky to get though work. So riding is not fun anymore. If i do ride its for 30 min and really the price I pay to ride is to much right now. If I ride I hurt for days after. At this point I am considering getting selling or free leasing my horse cause the cost of board is getting so high and I simply dont ride at all and cant seem to get a handle on the Lyme and Fibarmyaliga.
I am sorry for the frustration in my post but this is really affecting my life not only because I have had horses all my life but in all areas of it. I always wonder if the Drs. arnt missing something but all the blood work is good except for the lyme.
