posted
I have been on doxy for 4 weeks & stopped taking them 2 days ago. I was begining to feel slightly normal again but today I feel dreadful. Really tired & achy, bad tingling in hands & feet, ringing ears.
If lyme is such a slow growing bug why did the symptoms that had been getting slowly worse over the last 6 months come back so quickly.
I'm going to see my GP to see if she'll give me more doxy. There is only one LLMD near here and he is not taking more patients for 2 months.
I'm worried now how quickly i'm going to be back to square one. I've been feeling so much better.
The only good thing about all this is that it has proven that this is more than likely lyme. (1st & 2nd test negative, waiting for further test results to come back) I just hope my doctor will continue with treatment until I see a specialist.
Posts: 69 | From UK | Registered: Jun 2009
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Because you still have active Lyme infection. You never got Lyme to a zero state before you took away the limiter.
The concept that Lyme takes a while to come back after stopping antibiotics is based on actually beating it into submission before removing the antibiotics. If you had any symptoms at the point where you stopped antibiotics, it never went away.
The ILADS guidelines recommend continuing antibiotic treatment until 3 months or more after the last symptom has vanished.
ILADS also recommends at least 400mg Doxy per day, and treatment for the cyst form of Lyme.
ILADS also advises evaluation and treatment for co-infections. Unaddressed co-infections can be another factor in intractable symptoms.
posted
Thanks nenet, the good news is my GP has given me another 14 days doxy (only 200mg but that's what I have been on so far).
Hopefully by then I will have had back the new tests. This time they have sent tests for western blot (even though 1st test negative) & co-infections to a lab in Southampton.
I've also been referred to an NHS infectious diseases specialist- no idea of the waiting list for that.
I'm just hoping that they treat me as I'm going to struggle to pay for private appointment.
Posts: 69 | From UK | Registered: Jun 2009
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Did you go off of antibiotic treatment for at least 10-14 days before you were tested?
Any remaining antibiotics in your system could markedly affect your testing outcomes.
Have you asked here in the "Seeking a Doctor" forum for any LLMDs in the UK that might be covered by NHS? I really hope you can see someone other than an ID (Infectious Diseases) Doc. They are generally the worst of the lot when dealing with denial of "Chronic" Lyme, which in simple terms is any Lyme not completely gone after 28 days of treatment (aka the misguided IDSA guidelines).
There has been quite a bit of cooperation and worse between IDSA-leaning doctors and public health policy members, on both sides of the pond. The likely motivation being keeping VERY large numbers of citizens from discovering they have a chronic illness that needs long-term, extremely time and resource-consuming, and sometimes very expensive, treatment.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've been told that if you relapse quickly after going off abx, it is likely a co-infection. Makes sense since borrelia is slow growing and one probably wouldn't have an immediate relapse once they started to feel better.
Good advice to find an LLMD. You need evaluation for co-infections.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
The tests i'm waiting for are also for co-infections. I hope it shows something as I might then get more help.
The first two tests were before the doxy but I did have Penicilin vk & Fluxlocilin in Dec08 when I was bitten due to an infection in my ankle caused by the bite. (didn't know of lyme at the time) I think these could have effected the tests.
My local GP has been great but has little knowledge of lyme. As far as I have found there is only one llmd in the uk taking new patients and the cost of treatment & testing is very high.
I have sent PM to kareamber re UK llmd.
Posts: 69 | From UK | Registered: Jun 2009
| IP: Logged |
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Many of us come up negative on tests for Lyme and co-infections because the tests are not sensitive enough, or your immune system isn't strong enough to provoke a postive (the test measure your immune response to organisms).
Don't rely on tests for treatment.
Also, almost all doctors in the US and UK will not give you more than 1 months supply of antibiotics even if you come up positive on tests. Unfortunately Infecitous Disease doctors tend to be the worst to see for these diseases because they do not believe you have an on-going infection, so they will not give antibiotics.
This is why you need to see an LLMD.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic