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Lyme, too?

Lou

Senior Member
Messages
582
Location
southeast US
I developed a new (some of them old ones that had gone away) set of symptoms last summer that has finally led me to think I may have gotten Lyme.

I kept thinking something had just reactivated me/cfs symptoms, but the more I read about Lyme the more I think it the new culprit. The symptoms that came on suddenly are pretty spot-on for Lyme.

I'm sure there's Lyme forums, but since this is the place I trust was wondering if anyone here that may have both these maladies might offer some insight, suggestions as to natural treatments (I'll also take the antibiotics if I get diagnosed.

Thanks.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
There's a small, but significant number of people here with Lyme on Phoenix Rising and 97 threads with "Lyme" in the title
http://forums.phoenixrising.me/index.php?search/6746189/&q=Lyme&o=date&c[title_only]=1

I'm trying the Buhner protocol (which uses herbs) before I do antibiotics. I started a thread about here that includes links to his website and some other resources
http://forums.phoenixrising.me/index.php?threads/buhner-lyme-protocol.23202/

That said, many of the symptoms of Lyme are similar to other illnesses so it would be good to keep an open mind regarding diagnoses. Especially since Lyme tests aren't that accurate. Some tests are more accurate than others, but none are 100% accurate. There should be at least a couple threads here about Lyme testing (I know there's at least one, but I don't remember where it is).
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
That said, many of the symptoms of Lyme are similar to other illnesses so it would be good to keep an open mind regarding diagnoses.

.
Lou thanks for posting.

Yes I am looking into it to so glad to see the thread.

Ema, glad to hear you have had some improvement - that is terrific.

SO I too am just starting to think about it so would like to know is there a list of known symptoms please.

Testing is her in Australia is pretty basic i think but i was planning to start with that - GcMAF Australia kindly sent me some info on another thread.
Best,,


Ally
 
Messages
13,774
I'd urge caution with Lyme stuff. There are some doctors selling unreliable tests, and then recommending inappropriate treatments based on false positives.

There is also a danger of false negative results with Lyme testing.

Also, it seems that Lyme disease can lead to on-going symptoms post-treatment, perhaps like the sort of post-viral thing we see with EBV.

It does seem like there's a lot of uncertainty and quackery around Lyme, and I'd encourage everyone to be cautious and sceptical about Lyme stuff, and try to get second opinions before deciding to spend a lot of money, or commit to any particular treatment.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I'd urge caution with Lyme stuff. There are some doctors selling unreliable tests, and then recommending inappropriate treatments based on false positives.

There is also a danger of false negative results with Lyme testing.

Also, it seems that Lyme disease can lead to on-going symptoms post-treatment, perhaps like the sort of post-viral thing we see with EBV.

It does seem like there's a lot of uncertainty and quackery around Lyme, and I'd encourage everyone to be cautious and sceptical about Lyme stuff, and try to get second opinions before deciding to spend a lot of money, or commit to any particular treatment.


Thanks for that Esther..

And .... tartnation! - i was thinking finally something simple and testable to have or rule out.... no such luck it seems!

cheers

ALly
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
There are some doctors selling unreliable tests, and then recommending inappropriate treatments based on false positives.

Generally good doctors recognize that Lyme is a clinical diagnosis and that testing is only one piece of that puzzle. Testing alone can't make of break a diagnosis because it is understood that there are limitations to the testing. Hopefully new tests will continue to be developed that will make this easier.

The lymediseaseassociation.org website offers an ILADS approved doctor referral search for those in the US which may help identify doctors that understand the current thinking in terms of Lyme treatment.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Can you tolerate the AB's Lou?

One of the reasons that I have not had a Lyme test(s) is that it's hard to get one that this easy, fast, reliable and cheap.

Even if I was diagnosed the treatment could leave me out of pocket and sicker than when I started. Decades ago I tried some of the AB regimes and they made me worse off for at least a year. Also tried some of the other supplements used. Don't want to do that again.

Need to learn more about the severe reactions to treatment and I lost faith in Herx being the whole reason a long time ago.

My sympathy to people who have been diagnosed with Lyme as it is very hard to treat, takes a long time and doesn't seem to work for all.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
GcMAF Australia posted a list of Lyme symptoms in a thread (too tired to remember). The symptoms were very similar to lists for CFS/ME and fibromyalgia. Very confusing stuff. I've had a recurring rash where I was bitten by a tick so I'm pretty sure I have Lyme, but I'm still not 100% sure. Even if I do have Lyme, I still need to get tested for co-infections because those are common with Lyme. I've also heard of someone having a co-infection, but not Lyme (Borrelia). I'm not sure how common that is. I was hesitant to try antibiotics, but I've recently heard from a few people (including Ema) who have had success with them so if the herbs don't work maybe I'll look into that. I'd have to find another doctor and since my current doctor is covered by insurance I don't really feel like dealing with that now.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
GcMAF Australia posted a list of Lyme symptoms in a thread (too tired to remember). The symptoms were very similar to lists for CFS/ME and fibromyalgia. Very confusing stuff. I've had a recurring rash where I was bitten by a tick so I'm pretty sure I have Lyme, but I'm still not 100% sure. Even if I do have Lyme, I still need to get tested for co-infections because those are common with Lyme. I've also heard of someone having a co-infection, but not Lyme (Borrelia). I'm not sure how common that is. I was hesitant to try antibiotics, but I've recently heard from a few people (including Ema) who have had success with them so if the herbs don't work maybe I'll look into that. I'd have to find another doctor and since my current doctor is covered by insurance I don't really feel like dealing with that now.

Ah yes thanks Lotus it was GcMAF Australia i meant to tag. He might be kind enought ot re-post them for us or give us the thread link.


I don t recall a bite or a rash but most bite will give me big raised red lumps - esp spiders - so who knows?

So will cover all my bases .. what else can I do? Not a lot actually.

Incidentally for anyone in Austrlia - i posted somewere that testing for MTHFkR gene is free here if you have a history of DVT or PE but the pathology company has phoned me to say that is not the case...... they told me that in error - test costs 45 dollars ATM


ALly

v
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Ah yes thanks Lotus it was GcMAF Australia i meant to tag. He might be kind enought ot re-post them for us or give us the thread link.


I don t recall a bite or a rash but most bite will give me big raised red lumps - esp spiders - so who knows?

So will cover all my bases .. what else can I do? Not a lot actually.

Incidentally for anyone in Austrlia - i posted somewere that testing for MTHFkR gene is free here if you have a history of DVT or PE but the pathology company has phoned me to say that is not the case...... they told me that in error - test costs 45 dollars ATM


ALly

v
A significant amount of people don't experience a rash after being bitten. Mine didn't appear for the first time until 15 years later. I wasn't too sure until it appeared a second time last fall. Both times it happened a month or two after seeing a chiropractor. One of the places the Lyme bacteria resides is in the spinal fluid so I think the chiropractic adjustments might have reactivated my infection. I experienced a relapse after each time also. My rash was a bullseye rash so it seems extremely likely that I do have Lyme. I'm not sure what I would have done if the rashes didn't appear. I suspected Lyme before the rashes appeared, but after finding out that the tests weren't accurate I didn't know what to do. I showed the rash to my doctor and she didn't know what to think. Most doctors don't know much about Lyme.
 

GcMAF Australia

Senior Member
Messages
1,027
I developed a new (some of them old ones that had gone away) set of symptoms last summer that has finally led me to think I may have gotten Lyme.

I kept thinking something had just reactivated me/cfs symptoms, but the more I read about Lyme the more I think it the new culprit. The symptoms that came on suddenly are pretty spot-on for Lyme.

I'm sure there's Lyme forums, but since this is the place I trust was wondering if anyone here that may have both these maladies might offer some insight, suggestions as to natural treatments (I'll also take the antibiotics if I get diagnosed.

Thanks.
OK
this is an old list, so it is not complete
20 represents a good chance of Lyme
 

GcMAF Australia

Senior Member
Messages
1,027
This is from about 2006
The Canadian Lyme Disease
Foundation published a diagnostic
questionnaire that they say will help
guide a person to see if they have LD.
Twenty (20) YES answers out of the
seventy five (75) questions gives a
strong indication. Circle the ones that
apply and count the YESs.
Symptoms of Lyme Disease
The Tick Bite
(fewer than 50% recall a
tick bite or get/see the rash)
1. Rash at site of bite
2. Rashes on other parts of your body
3. Rash basically circular and spreading
out (or generalized)
4. Raised rash, disappearing and
recurring
Head, Face, Neck
5. Unexplained hair loss
6. Headache, mild or severe, Seizures
7. Pressure in Head, White Matter
Lesions in Head (MRI)
8. Twitching of facial or other muscles
9. Facial paralysis (Bell's Palsy)
10. Tingling of nose, (tip of) tongue,
cheek or facial flushing
11. Stiff or painful neck
12. Jaw pain or stiffness
13. Dental problems (unexplained)
14. Sore throat, clearing throat a lot,
phlegm ( flem ), hoarseness, runny
nose
Eyes/Vision
15. Double or blurry vision
16. Increased floating spots
17. Pain in eyes, or swelling around
eyes
18. Over-sensitivity to light
19. Flashing lights/Peripheral waves/
phantom images in corner of eyes
Ears/Hearing
20. Decreased hearing in one or both
ears, plugged ears
21. Buzzing in ears
22. Pain in ears, over-sensitivity to
sounds
23. Ringing in one or both ears
Digestive and Excretory Systems
24. Diarrhea
25. Constipation
26. Irritable bladder (trouble starting,
stopping) or Interstitial cystitis
27. Upset stomach (nausea or pain) or
GERD (gastroesophageal reflux
disease)
Musculoskeletal System
28. Bone pain, joint pain or swelling
carpal tunnel syndrome
29. Stiffness of joints, back, neck,
tennis elbow
30. Muscle pain or cramps,
(Fibromyalgia)
Respiratory and Circulatory Systems
31. Shortness of breath, can't get
full/satisfying breath, cough
32. Chest pain or rib soreness
33. Night sweats or unexplained chills
34. Heart palpitations or extra beats
Endocarditis, Heart blockage
Neurologic System
35. Tremors or unexplained shaking
36. Burning or stabbing sensations in
the body
37. Fatigue, Chronic Fatigue Syndrome,
Weakness, peripheral neuropathy
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
43. Psychological well-being
44. Mood swings, irritability, bi-polar
disorder
45. Unusual depression
46. Disorientation (getting or feeling
lost)
47. Feeling as if you are losing your
mind
48. Over-emotional reactions, crying
easily
49. Too much sleep, or insomnia
50. Difficulty falling or staying asleep
51. Narcolepsy, sleep apnea
52. Panic attacks, anxiety
Mental Capability
53. Memory loss (short or long term)
54. Confusion, difficulty in thinking
55. Difficulty with concentration or
reading
56. Going to the wrong place
57. Speech difficulty (slurred or slow)
58. Stammering speech
59. Forgetting how to perform simple
tasks
Reproduction and Sexuality
60. Loss of sex drive
61. Sexual dysfunction
62. Unexplained menstral pain,
irregularity
63. Unexplained breast pain,
discharge
64. Testicular or pelvic pain
General Well-being
65. Unexplained weight gain, loss
66. Extreme fatigue
67. Swollen glands/lymph nodes
68. Unexplained fevers (high or low
grade)
69. Continual infections (sinus,
kidney, eye, etc.)
70. Symptoms seem to change,
come and go
71. Pain migrates (moves) to different
body parts
72. Early on, experienced a "flu-like"
illness, after which you have not
since felt well.
73. Low body temperature
74. Allergies/Chemical sensitivities
75. Increased affect from alcohol and
possible worse hangover
Count the number you have circled.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I had a bulls-eye rash right after I was in a brushy area. This was after I already had ME. I developed worse neurological and eye symptoms. respiratory, too, if I recall correctly. I didn't know what was going on (and didn't realize the significance of the rash at the time) and wasn't diagnosed until years later.

I don't have much to say about testing except that it's inadequate. There's supposed to be a new one for Lyme although I don't know much about it. The coinfection tests are also inadequate.

I also don't have much to say about treatment. Sorry.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Thanks for these GC Maf Aus

Here ar my answers


Symptoms of Lyme Disease
NO recall of a tick bite or the rash)

Head, Face, Neck

6. Headache, mild or severe,


7. Pressure in Head,

White Matter
Lesions in Head (MRI) no My MRI was clear

8. Twitching of facial or other muscles

well yes i get occasional muscel twitchting


facial flushing - yes i have this a bit but i have rosacia as well

11. Stiff or painful neck

12. Jaw pain or stiffness i have a TMJ so yes

14. Sore throat, clearing throat a lot,
phlegm ( flem ), hoarseness,

Eyes/Vision
15. occasional blurry vision

18. Over-sensitivity to light yep

Ears/Hearing
20. plugged ear - right ear - not real bplugged but feels like something in there

21. Buzzing in ears - two short episodes of tinnitus




23. Ringing in one or both ears - yep two short episodes of tinnitus

Digestive and Excretory Systems yep all these
24. Diarrhea
25. Constipation
26. Irritable bladder (trouble starting,
stopping) or Interstitial cystitis
27. Upset stomach (nausea or pain) or
GERD (gastroesophageal reflux
disease)

Musculoskeletal System
28. Bone pain, joint pain or swelling
carpal tunnel syndrome
29. Stiffness of joints, back, neck,
tennis elbow yep
30. Muscle pain or cramps,
(Fibromyalgia) yep constant but rellieved by d- ribose

Respiratory and Circulatory Systems
31. Shortness of breath, can't get
full/satisfying breath, yep


33. Night sweats or unexplained chills

34. Heart palpitations or extra beats

Neurologic System
35. Tremors or unexplained shaking

37. Fatigue, Chronic Fatigue Syndrome,
Weakness

39. Numbness in body, tingling, i get tinngling in hadns fee d tan abdo occasionally - not sure if this is peripheral neuropathy


40. Poor balance, dizziness, difficulty
walking yep

42. Lightheadedness, wooziness


44. irritability,


47. Feeling as if you are losing your
mind

48. Over-emotional reactions, crying
easily
49. insomnia
50. Difficulty falling or staying asleep


52. anxiety - well i get anxious feeling somethisse but usually whe i am upright so i thin k it is from POTS/OI

Mental Capability


54. difficulty in thinking
55. Difficulty with concentration or
reading


57. Speech occasionally slurred

General Well-being
65. Unexplained weight gain,
66. Extreme fatigue


69. Continual infections chest and throat usually anytime I do not take vitamin c

70. Symptoms seem to change,
come and go

71. Pain migrates (moves) to different
body parts

74. Allergies/

75. Increased affect from alcohol and
possible worse hangover

....................................................................................................................................................................

Count the number you have circled.

i got 42

(Amazing - just ask a simple question and you get the answer to life, the universe and everything!)


wow the symptoms are so similar to ME/cfs aren't they?


something to think about.

interesting that vitamin c helps and high salt intake - as for POTs/OI

Cheers and many thanks again,

Ally