Does this sound like lyme

[mpsloan]

I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

 

I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

 

After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

 

Any thoughts or suggestions welcome.

[Lymegal1]

1 month of antibiotics is usually not enough. It's more than likely you do have chronic Lyme and perhaps some co-infections which would require different abx for months or years.

[SSS]

I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

 

I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

 

After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

 

Any thoughts or suggestions welcome.

 

 

**Hi- well, it certainly could be... it will be interesting to see how our CD57 test comes back, as well as the other testing on yourself.

Have you started taking Doxy again yet? Your response to it may also be telling.

It's a big ball of wax- there may also be some co-infections that went along with the original Lyme you had- but how wonderful you were able to treat so quickly after that bite-

by doing that, you very well may have tamped down the infection, and did not get continue to get sick-able to function through life.

Another thought is perhaps the recent stress of your PANS child's diagnosis weakened your immune system and allowed Lyme to re-surface.

Either way, wishing you the best, sounds like you are in good hands-

[mpsloan]

I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

 

I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

 

After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

 

Any thoughts or suggestions welcome.

 

 

**Hi- well, it certainly could be... it will be interesting to see how our CD57 test comes back, as well as the other testing on yourself.

Have you started taking Doxy again yet? Your response to it may also be telling.

It's a big ball of wax- there may also be some co-infections that went along with the original Lyme you had- but how wonderful you were able to treat so quickly after that bite-

by doing that, you very well may have tamped down the infection, and did not get continue to get sick-able to function through life.

Another thought is perhaps the recent stress of your PANS child's diagnosis weakened your immune system and allowed Lyme to re-surface.

Either way, wishing you the best, sounds like you are in good hands-

 

 

I just got my bloodwork back. Please give me your thoughts.

 

HNK1 (cd57) Panel

%CD8-/cd57+ Lymphs 3.4% refernce interval is 2.0-17.0

Abs cd8-cd57+Lymphs 61 Reference interval 60-360

 

RDW 15.9 flagged high range 12.3-15.4

Glucose, Serum 102 High 65-99

Bun/cratinine Ratio 25 High 9-23

Vitamin D, 25-Hydroxy 16.7 low range 30.0-100

 

I am confused by the first number on cd57 the %, that is in the normal range, however the cd57 abs is only 61- even though that is in the reference range would that still be considered- chonic lyme?

 

LLMD has not reviewed results with me yet, however, he said he treats symtoms to the results. He felt that my symptoms all pointed to lyme.

and has started me on DOXY(4 days on it now) probiotics, vit d 5000ui, cq10

 

I started Doxy and probiotics and feel like a truck hit me. very fatigued alot more brain fog......doxy seems tough on my stomache, and I don't know what I am supposed to eat or not eat.....

[Hopeny]

FWIW I asked DD's LLMD about CD57 and he said that Ginger Savley (sp?) who did the original work with CD57/was a big proponent of it, at the recent ILADS conference advised that after looking at thousands of patient records, she could not correlate the data with CD57 and is no longer using it. I know many people do, I'm just putting it out there.

 

In regards to Doxy even though it says not to, most people take it with food. With Vitamin D we waited a while about six months into treatment, there are different schools of thought, some that D feeds Lyme and some that you need D to rebuild the body even if it feeds Lyme. If you are really feeling bad maybe eliminate it and add back,

 

Have you been completely cleared of Babesia? The reason I ask is that I understand CoQ10 feeds Babesia and should not be taken by someone who has babs.

 

Also one thing we have found Burbur by Nutramedix really helps with detox/herxing. My DD9 is taking 5 drops, I am not sure the adult dose but it is out there on the internet. It may be something for your to consider, I just give it far away from the abx.

 

Oh and yes, Lyme can come and go like that. You may need to consider treating when symptoms crop up going forward. Good luck

[KaraM]

When I had my CD57 done, it was just one value, not a percent, so I'm not sure how to read those numbers...

 

I have no idea how long I've had Lyme, but have to say I've had different symptoms come and go over the course of several years. So for example, in my 20s, I thought I was getting arthritis in my hands...couldn't open (preivoulsy opened) jars, etc. But at some point it went away on it's own. My vision changed around the same time to the point I needed glasses. That need disappeared as well at some point. I used to wake up at night wanting to rip my skin off about 7 years ago...that went away on its own as well. At one point, maybe 15 years ago, the bottom of my feet would be very tender when I stepped on the floor in the morning. That went away on it's own. These are things that lasted for several months, may even years...but eventually just disappeared on their own. I have a myriad of other symptoms (anxiety, brain fog, fatigue, etc), that have all ebbed and flowed at different points that could always be blamed on life circumstances. My point is, that yes, symptoms can come and go and morph.

 

I'm happy to say that once I started treatment a year ago, lots of other things improved. I didn't start Rifampin until this past September. That did a bit of a number on brain fog in terms of herxing. I felt like such a dunce. That lasted about a week of so. I finally feel like I have an IQ of at least 100 now. Compared to the past, I feel brilliant .

 

Kara

 

 

I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

 

I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

 

After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

 

Any thoughts or suggestions welcome.

[red]

I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

 

I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

 

After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

 

Any thoughts or suggestions welcome.

I had very similar situation with a bit more history to it as I did high doses of doxy on the 1st day of rash and still got extremely fatigued. Over the years I recovered but had low grade chronic symptom like yours but then really crashed this past year. I had every work up for everything and all normal except for bartonella per galaxy diagnostics. I recently sought a 2nd opinion and just finished 6 weeks off antibiotics which made me so sick that I no longer have the strength to drive a car one mile. A heavy price to pay for a 2nd bart test. I am back on doxy and AZ and will add low dose rifampin later. It has been a horror story. I abhor diagnosing on symptoms but you sound much more like bart than lyme. Vit d does NOT feed lyme. In fact D is critical for immune system function. There are no scientific papers about Lyme and D. And I think you can be safe to take CoQ10. Lot of folk lore out out here about lyme and other diseases. Bartonella is a stand alone disease and is not a "co-infection". Early epidemiological work is beginning to show that bart may be more common than lyme. Your labs to not look that bad. YourCD 57

is at the border of low and your Vit D is very low.

Red

Edited March 24, 2013 by red

[tpotter]

Definitely TAKE DOXY WITH FOOD! Our llmd said that it's only tetracycline that you don't take with food (even though the pharmacists put doxy down as not to take with food.)

 

You may have also gotten a second lyme infection and/or bartonella and/or babesia. You're not immune to getting it again.

[nicklemama]

DS's doxy script bottle says in large letters "maybe taken with or without food". It also says take with a full glass of water.

[red]

FWIW I asked DD's LLMD about CD57 and he said that Ginger Savley (sp?) who did the original work with CD57/was a big proponent of it, at the recent ILADS conference advised that after looking at thousands of patient records, she could not correlate the data with CD57 and is no longer using it. I know many people do, I'm just putting it out there.

 

In regards to Doxy even though it says not to, most people take it with food. With Vitamin D we waited a while about six months into treatment, there are different schools of thought, some that D feeds Lyme and some that you need D to rebuild the body even if it feeds Lyme. If you are really feeling bad maybe eliminate it and add back,

 

Have you been completely cleared of Babesia? The reason I ask is that I understand CoQ10 feeds Babesia and should not be taken by someone who has babs.

 

Also one thing we have found Burbur by Nutramedix really helps with detox/herxing. My DD9 is taking 5 drops, I am not sure the adult dose but it is out there on the internet. It may be something for your to consider, I just give it far away from the abx.

 

Oh and yes, Lyme can come and go like that. You may need to consider treating when symptoms crop up going forward. Good luck

Vit D is absolutely essential to immune function. Anybody who thinks starving their body of Vit D to starve lyme is making a huge mistake.

As for starving Lyme here is a recent article about manganese Quirky Lyme Disease Bacteria: Unlike Most Organisms, They Don't Need Iron, but Crave Manganese

http://www.sciencedaily.com/releases/2013/03/130321205712.htm

Red

[mpsloan]

Thanks for all the replies. LLMD just added second abx to the mix.

He has me on doxy 100mg 4 per day

and has just added CEFTIN 500mg 2x day

taking coq10 4per day

10,000 ui of d3

b12 sublinguil 1per day

and megadose multi 4 per day

probiotics

and has just added diflucan says my complaint of bloating likely due to yeast.......

and trazodone at night.......

 

 

On a good note PANDAS/PANS ds7 has been doing very well, llmd just upped his abx , he is on amox and zithro- today a few ocd "quirks" started to creep back in, not sure if increase in abx could be cause a slight herx with is perhaps the begining of a flare up?

After 2months on abx about 65-75% of ocd symptoms have greatly improved....