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» LymeNet Flash » Questions and Discussion » Medical Questions » Post Lyme Syndrome ???

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Author Topic: Post Lyme Syndrome ???
middlesizedpanda
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I know you will all say that there is no such thing as post lyme syndrome, but I would be grateful if you could give me some advise.

I have had 3 negative tests for lyme disease from the nhs & I really cannot afford to send a test to igenex.

I have seen several doctors due to ongoing symptoms (mostly neuro) following an infected blister on my ankle in Dec08 which could have been a tick bite. I was given 2 wks of penicillin for the infection, followed by 7 weeks of 200mg doxy as I convinced them it could be lyme.

They now think I have some sort of post infection syndrome, (I feel as if I have been plugged into an electrical current for the past 8 months), possibly caused by lyme and possibly but some other infection which has caused peripheral neuropathy.

I have been offered steroids as treatment but as I still have doubt that there my still be active lyme I have refused. The doctor is not prepared to issue any more abx.

I also have low white blood cell count. 6 months ago it was 2.5 but it has now risen to 3.

I know you would all recommend abx but as this is not an option, what treatment would you recommend. As far as I can see, the best option is to boost the immune system so that maybe it can fight the lyme it self.

I have an appointment with the consultant on 29th Sept and would like to be able to discuss some possible options for treatment that he may agree to.

Any Ideas

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coltman
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You can try MP. It is very cheap. I dont see how can you "boost immune system" if you indeed have lyme , because BB is very powerfull immune suppressor by itself ( I bet one of the reasons some people dont show antibodies until a few month in treatment ). Also testing while on abx is not good if you want see antibodies
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middlesizedpanda
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Thanks for the reply coltman but what is MP? i've tried to google it but not worked it out.

My last test was in June when I was on abx, I'm going to try to get him to retest.

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massman
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Tell the idiots that lyme is a CLINICAL DIAGNOSIS and NOT a lab diagnosis. This means that if you have some of the symptoms from the survey below you may have lyme.

ELISA followed by Western Blot is about 45% false negative. that means those tests, almost half the time, say you don't have it when you really DO !

Lyme Survey

1. Tick Bite - if yes continue, if no go to #6

2. Rash at site of bite

3. Rashes on other parts of the body

4. Rash basically circular / spreading out

5. Raised rash, disappearing + recurring

Head, Face, Neck

6. Unexpected hair loss

7. Headache, mild or severe

8. Twitching of facial or other muscles

9. Facial paralysis (Bell's Palsy)

10. Tingling of nose, face or cheek

11. Stiff or painful neck

12. Jaw pain or stiffness

13. Sore throat

Eyes, Vision

14. Double or blurry vision

15. Increased floating spots

16. Pain in or swelling around the eyes

17. Oversensitivity to light

18. Flashing lights

Ears, Hearing

19. Decreased hearing in one or both ears

20. Buzzing in ears

21. Pain in ears

22. Ringing in one or both ears

Digestive and Excretory Systems

23. Diarrhea

24. Constipation

25. Irritable bladder (trouble starting, stopping)
26. Upset stomach (nausea or pain)

Muscles and Joints

27. Joint pain or swelling

28. Stiffness of joints, back, neck

29. Muscle pain or cramps

Lungs and Circulation

30. Shortness of breath, cough

31. Chest pain or rib soreness

32. Night sweats or unexplained chills

33. Heart palpitations or extra beats

34. Heart blockage

Nervous System

35. Tremors or unexplained shaking

36. Burning or stabbing sensations in the body

37. Weakness or partial paralysis

38. Pressure in the head

39. Numbness in body, tingling, pinpricks

40. Poor balance, dizziness, difficulty walking

41. Increased motion sickness

42. Lightheadedness, wooziness

Psychological Well Being

43. Mood swings, irritability

44. Unusual depression

45. Getting or feeling lost (disorientation)

46. Feeling like you are losing your mind

47. Overemotional reactions, crying easily

48. Too much sleep or too little (insomnia)

49. Difficulty falling or staying asleep

Mental Capability

50. Memory loss (short or long term)

51. Confusion, difficulty thinking

52. Difficulty with concentration or reading

53. Going to the wrong place

54. Speech difficulty (slurred or slow)

55. Stammering speech

56, Forgetting how to perform simple tasks

Reproduction and Sexuality

57. Loss of sex drive

58. Sexual dysfunction (females only)

59. Unexplained menstrual pain, irregularity

60. Unexplained discharge

61. - males - testicular dysfunction, pelvic pain

General well-being

62. Unexplained weight gain or loss

63. Extreme fatigue

64. Swollen glands

65. Unexplained fevers - high or low

66. Continual infections (sinus, kidney, eye, etc.)

67. Symptoms seem to change, come and go

68. Pain migrates (moves) to different body parts

69. Early on experienced a ``flu-like'' illness after
which you have not since felt well

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Keebler
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-
Good call avoiding steroids. That can make this MUCH worse, unless life-threatening (and then you'd want abx protection with it).

---

It's not that you want to boost your immune system but bring it into balance. Simply put (because I don't get the full picture yet) the immune system has (at least) two parts: Th1 and Th2.

In lyme, one part is over-active and the other under-active. So, be very careful trying to "boost" anything. Support with Vitamin D3 (not D2) is a good idea, especially if you don't get much sun exposure on your skin (20 minutes a day).

--

Often, what some doctors call "post-infection" is really still infection that has not been properly treated.

Lyme tests are not perfect and, even 3, could be wrong. Lyme can go on for years - or a lifetime - if it is not handled adequately.

Also, there are other chronic stealth infections to consider, as well as other tick-borne infections.

I need to rest but will come back and see of others have added other information.

you might look at this site: www.cpnhelp.org

-=

(Wow, I see you got several replies all the while it took me to type this one.) Also check out the NEWBIE thread at the top of Medical forum - by treepatrol.

Good luck.
-

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middlesizedpanda
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I can tick off loads of those symptoms, but as we know they can be caused by other things and my problem is convincing a doctor that relys on tests.

The one symptom I have that I have not managed to find with any other posible diagnosis is the clicking joints. All my joints click when I move, It sounds like someone snapping sticks. This seems to be specific to lyme.

Does anyone know of any other symptoms which might help convince him it could still be active lyme?

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22dreams
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Definitely take suggestions for immune support measures.

If you haven't already, you may want to contact UK advocacy groups for assistance finding at the very least lyme-friendly doctors:

[email protected]

http://www.bada-uk.org/homesection/contact/h25355.php

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massman
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That survey is mostly from Dr. B's information.

I would suggest getting rid of a doc that does not have the brains or the _alls to clinically diagnose.

Many of them use tests to not have to treat people, IME.

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WildCondor
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There is no such thing as post-Lyme syndrome, you are either cured, or not. Tell those ridiculous doctors to start educating themselves! Lyme is a CLINICAL diagnosis, you don't' need tests,
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22dreams
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Middlesidedpanda,

Unless you have a history with this doctor, have an existing rapport, where you feel he's open to listening and invested in solving your health issues---

I wouldn't bother trying to convince him of anything. The average NHS md is as ignorant as the average physician here.

If you live remotely and aren't mobile, you may not have a choice in the matter.

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seibertneurolyme
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With the low white blood count maybe you should be tested for ehrlichia and/or bartonella.

If you do or did have Lyme disease you probably have at least one other coinfection. Sometimes it is easier to get a positive test for a coinfection.

Bea Seibert

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Lymetoo
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If you can't afford a $200 life saving test from Igenex, then I guess you'll have to live a life with Lyme.

Keep reading here so that I will feel hopeful that we can get through to you!

--------------------
--Lymetutu--
Opinions, not medical advice!

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sutherngrl
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I agree that Lyme is a "clinical diagnosis".

I disagree with Coltman, as I showed positive IGM bands 41 and 23 while on antibiotics. Did not show any bands before starting antibiotics.

Just my own opinion, but I don't believe you can kill spirochetes without antibiotic treatment.

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middlesizedpanda
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I have emailed Igenex for costs for tests. They have replied but not attached price list. I will try again.

Its not just the cost of the tests, as Igenex would not be recognised by the nhs, even if they did show positive it would not get me treatment.

I really need to try to get an nhs dr to take this seriously - thats why i'm preparing my case to take with me on 29th. I have already had 7 wks doxy, its not that they have not been at least partly supportive, even without a positive test.

I definately would not be able to afford private treatment, especially since it seems it would be for a long period of time.

I have only managed to find one LLMD in uk taking new patients and they are VERY expensive. This is why i'm trying to gather information to support my case for nhs treatment.

I am taking this seriously, but I am not entirely sure this is lyme. I don't think its right to take high dose abx if you're not sure. If only there was a reliable test.

I do understand there are many other people on this forum with the same problem & there is no easy answer.

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massman
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on the survey - symptoms can come from other things BUT lots of these sympyoms together are a good indication.
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gemofnj
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even if you arent sure, the best way to treat is with abx.

most doctors agree its worth a try, at best your symptoms will be reduced, and then you will have the answer.

in other words, better to treat than not.

even after i had a positive test, i still second guessed the results. i am now in remission after a short 9 months of abx.

good luck to you. since my daughter lives there, as i understand the medical structure of the UK and their lack of lyme literate doctors.

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purplemom
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massman,

where did you get this stat from?

"ELISA followed by Western Blot is about 45% false negative. that means those tests, almost half the time, say you don't have it when you really DO !"

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glm1111
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You might want to check out the parasite/worm threads. They can cause a lot of similiar symptoms to Lyme.

If you type in parasites and Lyme in the search bar you may be surprised. 90% of the population has parasites.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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TerryK
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If you absolutely can't get to a lyme literate doctor then the next best thing would be to try some alternative treatments and see if you get a response. Did you have a response to abx??

The dose of abx that they had you taking was not enough. 200 mg is bacteriostatic. Only keeps it from reproducing and not for long enough to get rid of the infection.

As others mentioned, co-infections must be addressed in order to be successful in treating lyme.

Read the Buhner book "Healing Lyme", The Cowden protocol etc.. There are lots of posts here at lymenet about alternative treatments.

Here is another place to look for info.
http://www.lymeinfo.net/alt.html

Bottom line, after being bitten and treated by your doctors, you are still sick. If your doctors can't figure it out, and refuse to go further, then you have to do it yourself.

Don't buy into the many bogus diagnosis that are given out when the doctor can't figure out what is wrong. Chronic Fatigue syndrome, Fibromyalgia, MS etc. etc. All illnesses with unknown cause. No real treatment except pallative care. Your life can slip away while recieving no real help.

Wishing you the best,
Terry
I'm not a doctor

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massman
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Got that stat from this board. Remembered reading it here and posted to see if someone could give me the source.

Somebody did reply, I copied it for my PCP, a DO that has seen some lymies in CT. Not extensive work though. He thanked me but not sure if that was for true interest or politically correct.

Perhaps you could search for that reply to me. I was brain dead enough to not copy + keep it.

Checking for or treating for parasites is also a good idea. IME specific mixed herbals ( www.inno-vita.com ) work really well. One blend for large, another for small. Not sure if you can get them in UK.

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Vermont_Lymie
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quote:
Originally posted by WildCondor:
There is no such thing as post-Lyme syndrome, you are either cured, or not. Tell those ridiculous doctors to start educating themselves! Lyme is a CLINICAL diagnosis, you don't' need tests,

Exactly. You are going to have to make a decision, on whether to treat lyme by seeing a lyme literate doctor, or suffer the consequences of untreated lyme.

That is what it sounds like to me. I am not a doctor, just someone who suffered the consequences of untreated lyme for too long. Hope you can see a lyme literate doctor.

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treepatrol
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Your infected get a LLMd and save your life at least save yourself all the pain most of us have gone through.
The national institutes of health not good.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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METALLlC BLUE
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You need to convince yourself first that you are in-fact going in the right direction. You won't be willing to invest heavily financially (Nor go the distance to get the financial support) unless you know you have to.

That is why the $200 Igenex Western Blot is worthwhile. Lyme is a clinical diagnosis, but the problem that I've noticed is that some patients need to be convinced more so than doctors, else they bounce around for years listening to all the wrong people.

It's worth the money, because even if it's negative the probability is high it will convey some information that will help. Once you get a "whiff" that you're on the right track you can run other circumstantial testing, like Brain SPECT scans, and co-infection and various other testing through insurance supported labs. People who do have various bands show up are more inclined to invest in a Lyme Disease specialist, even if it means going into debt -- because the alternative is not pleasant.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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massman
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Very good points MB.

Some people are very "logic oriented" and only feel comfortable with logical conclusions.
That may apply to this case.

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middlesizedpanda
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I would like to thank everyone for their replys, I do understand your intention is to knock sense into me.

I think Metallic Blue has a good point, I am a very logical person, this illness is not logical and discisions are difficult.

My family is not convinced & neither are my doctors. This is a very difficult situation.

If they will not repeat the WB next week I will go ahead with an Igenex test. If they do I will wait & see the result first.

You are right, I am not convinced it is lyme - this is my problem. All I do know is I am not well and don't know why. I may possibly have been biten by something that may possibly have been a tick.

I go on this website when no one is in the house, just because they think im crazy.

I dont look ill, I just feel ill.

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Lymetoo
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Most of us don't look ill either.

Good luck with the pursuit. Keep reading!

www.wildcondor.com/lymelinks

www.igenex.com

--------------------
--Lymetutu--
Opinions, not medical advice!

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liesandmorelies
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Lymetoo is correct!

I always say we got the "Oh, but you look so good" disease.

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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liesandmorelies
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Lymetoo is correct!

I always say we got the "Oh, but you look so good" disease.

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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METALLlC BLUE
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quote:

I would like to thank everyone for their replys, I do understand your intention is to knock sense into me.

I think Metallic Blue has a good point, I am a very logical person, this illness is not logical and discisions are difficult.

My family is not convinced & neither are my doctors. This is a very difficult situation.

If they will not repeat the WB next week I will go ahead with an Igenex test. If they do I will wait & see the result first.

You are right, I am not convinced it is lyme - this is my problem. All I do know is I am not well and don't know why. I may possibly have been biten by something that may possibly have been a tick.

I go on this website when no one is in the house, just because they think im crazy.

I dont look ill, I just feel ill.

And just be aware, some may try to convince you that the Igenex testing is invalid and lacks credibility. If you get a positive test result, it's not uncommon for physicians to claim "False Positive" Beware that this is 100% false. The lab is fully accredited, and has approval across many states, including the boards that determine license renewal after investigations that are conducted by interdependent organizations. All back-testing and comparisons have shown Igenex Western Blots to be highly accurate and sensitive -- but they're only accurate if the actual antibodies are in the blood sample. It's not any given labs fault if their test is 99% accurate, but that the samples which are in-fact coming from infected hosts lack the antibodies and thus come back negative.

So, be aware of that. The problem with Quest and Labcorp and many other commercial tests isn't accuracy, but sensitivity. Igenex is both sensitive and accurate but is still subject to negative results in immunocompromised individuals, especially those on steroids or who have been ill for many years.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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